Thursday, December 11, 2014

The Day I Found Dr Richard Aron and Our Healing Journey Began

To follow our journey from the beginning, please click on this link Skin Deep which was my very first post regarding our ongoing struggle with Eczema. When I started blogging, I blogged about my family and our lives, so the posts are usually fun-filled, however Skin Deep deviated from the norm. As harsh as it is, that is exactly how our life was. Reading it now, makes my stomach tighten and my heart beat a little faster from sheer horror. You may think the word "horror" is an exaggeration, but it is nowhere close to what we have been through, and that blog post recounts a lot of the pain.

Secondly, please click on this link The Eczema Chronicles to read, on a monthly basis, what different medications and alternative therapies we tried, for a 16 month period, when Tomato was so bad that she couldn't walk or go to school! This is a real glimpse into the life of an eczema sufferer and how the entire family is affected daily.

Those were very dark, hopeless days, until we found the light at the end of the long 5½ long tunnel, and it wasn't an oncoming train, it was just pure, beautiful light! For more "before" photos go to the bottom of the page and click on the other Dr Aron Links.


*****

I have included the last 2 paragraphs from The Eczema Chronicles, so if you have not chosen to read that post, this one will still make sense! 


On Sunday 30th November Tomato was battling with the itching. She loves having play dates with her little friend at a local coffee shop that has a playground, so she asked if I would set up a play date with her friend, which I did. Because she hadn't bathed in over a week, I told her that she had to bath before we went out to meet her friend. She was very stressed but I eventually coerced her by making it special, saying she could bath in my bath, I would be there the whole time, I put on relaxing music and she tentatively got in. She was in the bath for no more than 2 minutes before the screaming started and she had scratched her skin raw before I was able to get her towel! I dabbed her dry as I had been taught, put some Vaseline on and put her in front of the TV to distract her from scratching. It didn't help. Within minutes she was bleeding, not just the smearing of blood on the couch that by now was the norm, but dripping drops of blood all around her and when it was time to go out to see her friend, she was too sore to get off the couch and she couldn't stop crying. Sometimes I wonder if her behavior is just for attention, but today I realized that she would have had to be very sore to cancel her play date with her best friend. This was the beginning of an "all-fall-down day." I went upstairs and cried and cried and cried.

I consider myself to be a very strong person, but the past few years have taken their toll on all of us and I was drowning. This is the day I decided to reach out and join a support group, which I had never even considered before. I needed to cry and vent my anger of having to watch my child suffer, to other families going through the same horror as we were. I was ready to give up. I felt that I wanted to run away and never come back. The helplessness of our situation was weighing so heavily on me. I couldn't even see through my tears. I got into bed in the middle of the day and left hubby to feed, bath and put the kids to sleep, I was exhausted and I had been told categorically that there was no hope by all the medical professionals. Tomato had twice told me that she didn't want to live anymore and I totally understood how she felt, but hearing those words from your child is heart-breaking. The situation was hopeless and depressing.

Watching TV after bathing on 30 November 2014
When I eventually stopped crying, I started to Google. I found a Facebook group but it was closed and you had to ask permission to join, so I kept researching and I came across a video of a dermatologist, Dr Richard Aron who was interviewed by Carte Blanche. Suddenly I was interested. Carte Blanche is a show that has been on South African TV for probably 15 years or more and has an excellent reputation of weeding out the con artists and exposing controversial issues that other shows are too afraid to report on. 

I instantly was drawn to this man. He made sense! The skin needs a combination cream of cortisone/ steroid as well as an antibiotic to stop the staph infection and of course a moisturiser. We had been using these, but in extremely high doses. Dr Aron explained how it worked and exactly how staph worked. Our whole family had been plagued by staph infections that Tomato had kindly handed around our family for the past 5½ years. Hubby had to have an abscess drained surgically due to one of his infections and when Lettuce was 2 days old he got 2 "pus things" (as Tomato calls them) in his groin and again 5 months later, a huge one on his forehead! We had used all of those medications that Dr Aron mentioned - AND IT STILL WASN'T WORKING!! 

Here is the Carte Blanche video that changed our lives:



Due to the fact that the video was 5 years old, I thought he'd probably retired or worse, died (sorry Dr A!) So I went to Dr Aron's website and was delighted to discover that he was alive and well, and was offering cyber-consultations. Even when I read that, my inner BS radar did NOT go off. I live in South African where we are targeted daily by con artists, so I question everything. My BS radar can detect a con artist from miles away and this is usually what happens when somebody tells me to deposit money into a bank account before I've even met them!! But my gut said "go for it, you've got nothing to lose." My practical brain however, ignored my gut and decided to look for some "dirt" on Dr Aron (apologies again!) Surely there was someone who had an axe to grind with him, I wanted to see the negative comments, so I could get a balanced view, so I continued searching. The only "negative" thing I could come across was this article Eczema Expert Defended by Parents that had been recently published, which showed that parents had seen dramatic results! Parents who sounded like they had been living through the same hell as we had! Parents who were trying a different approach and going against their own doctor's advice.

I then requested to join the Dr Aron Eczema Treatment Discussion Group on Facebook. I was reading through success story after success story and realised that this entire group of parents were (or had been) in the same situation as we had been, to varying degrees. It was such a positive, uplifting group and I couldn't find one comment that was judgemental, only helpful. I decided to read as many comments as I could, but I was getting excited, could this be the answer?  I was umming and ahhing as to whether to proceed, when I came across a comment from one of the administrators saying that Dr Aron was going to take a well deserved break and would not take on any new patients from 1 December until late January 2015. My heart dropped, it was 8pm on Sunday night, 30th of November! Now I am an instant-gratification sort of chick and patience is NOT a virtue of mine, so there was NO WAY that I could wait that long if it was possible that Tomato could get relief, like the other children who were mentioned on the forum! 

I rushed down the stairs and into Hubby's office (he was catching up on some work after a hectic day of being a single parent with the kids) and I said "I'm just telling you that I'm about to spend some money on the Credit Card for a new Dr for Tomato and I have to do it NOW!! I just have a really good feeling about this!" He looked at me like I was mad. He didn't look like he was comprehending and he just said "OK??" very slowly. I rushed out, got my Credit Card and switched on my PC. I had no idea how I would do it, but I was going to follow the instructions and call Hubby if I needed help making the payment. But it was so easy! I put in my details and viola I got a message asking me to send an email with some photos to Dr Aron and wait 5 working days for a response, no mention of him closing down over December - phew! I sent the photo that I had taken that day (see photo above) and gave a quick run-down of her condition, including that she was suicidal and that she was coming up with ideas on how to kill herself and begged him to help us. I got an automated response saying due to the increase in patients, I may need to wait up to 5 days. Phew! At least I had got in my request before the deadline. (We eventually travelled to meet the man. See that blog post here: Meeting Dr Aron).


I waited and waited and waited, hoping it wouldn't be 5 days due to my impatience issue that I mentioned before. Strangely I never once thought that I wouldn't receive a response. I checked my email all the time and then he phoned me! It was Tuesday afternoon (2 December). We had a chat about Tomato and the severity of her skin and how we had literally tried everything, so I wasn't sure that his method would help us. He made promises and we joked that he sounded like a used car salesman, telling me what I want to hear and I admitted that I wouldn't be taken in by a used car salesman's promises! He then said that I should only go ahead if this resonates with me. That word speaks volumes. I have NEVER heard that word uttered by any other healthcare professional. To me, that was a sign, confirmation. When he used the word "resonate" I immediately knew that this was going to work. I also told him that Tomato was taking anti-anxiety meds and she was currently using Vaseline and Steroid cream on her skin twice a day. She hadn't bathed since I tried on Sunday and before that, it was at least a week, probably two or three. Dr Aron said she may NOT use Vaseline on her skin again as it was the perfect breeding ground for bacteria and he warned that the first application of the cream may hurt her. My heart sank. But he promised that after the first application she wouldn't mind. I was a bit concerned because me forcing cream on Tomato in the past, had caused a lot of her anxiety and I told him this.

Dr Aron asked to talk to Tomato but she was too timid to ever speak to anyone (that's what eczema does to children, it robs them of their confidence), so I put him on speaker. He was so kind to her and drew her out of her Eczema-induced introverted shell. He told her that she needed to put the cream on (a huge ask in itself to apply a cream) and she wasn't impressed. He told her that it was magic cream and he had made it specially for her and had sent it on a huge Jumbo Jet. He asked her if she knew what a Jumbo Jet was and she whispered that she did. He went on to tell her that she needed to make sure her mommy collected it at the pharmacy right now because it was waiting for her! He then told her she needed to stay home from school and get creamed 6 times a day for 5 days. In exchange she could relax at home and not worry about school and homework. He then asked if she was good at maths and asked her 3 sums that she had to work out. He told her she was a super star and she was sold! She promised to try the cream. I thanked Dr Aron and we went to get the cream!

I had seen on the video that the modern world did not like mixing creams but I did not expect the reaction I got from the pharmacist! He said "I'm leaving in 15 minutes, I don't have time to mix creams!" After a heated exchange he stormed off to mix the cream. The pharmacy was only closing in 45 minutes, so I was not impressed, I was a mother on a mission! I was so excited to get started, I felt like applying it in the car! 

Day 1
As soon as we got home I applied a layer of cream. I am the M-A-S-T-E-R of distraction, having had to apply so many different medications to Tomato's skin over the years, so I sat her on the kitchen counter with my ipad and allowed her to play games (huge treat). I watched her play the game and talked to her, asking questions about how it worked, while I creamed. I knew the very sore, open wound areas on her body, like the back of my hand, so I waited to apply cream to these areas last. When I began on her ankles she started going wild, screaming in pain, but I calmed her down and asked her questions about who was who in the game and eventually I got her whole body creamed without too much fuss. I then let her play on the ipad until dinner was ready, as I knew that would take her mind off her skin and the constant itch.  Our kitchen counters are made of black granite and when she got off, I could write my name in the dry skin flakes that had landed on the counter during the 10 minutes that she had been sitting there scratching. 

I let her stay up later that night so that I could get another application on her, again while she played on the ipad, this time I found a quick video on funny animals that would entertain her. She didn't complain at all about it being sore. That night she went straight to sleep!! That had never happened before. Usually I spend the whole night begging her to relax and tickling her back so the itch wouldn't take over. I got to eat dinner with Hubby AND I got to watch some TV uninterrupted!! Whoo hoo!  Every time I checked on her she wasn't scratching! She was sleeping!! I even pulled Hubby out of bed to show him how her ankles were already looking different, they weren't dry and flaky anymore! He told me that I was getting ahead of myself, we had been here before, we had been promised the world by so many doctors, he firmly told me that I should be cautiously optimistic but manage my expectations. I knew he was right but I made him look at her ankles (with the torch from my cell phone) and he had to agree that they looked red but not dry and flaky! NOTHING was going to stop me being excited. Deep down I just knew that this was the answer, it just felt right. It resonated with me.
20 hours later, the red marks are much lighter and not itchy




Day 2
I carried out Dr Aron's instructions to the letter and the next night she bathed. Not for long, but she bathed, enough to wash the important bits and get out. AND she didn't scream! She was panicky that it was starting to get sore, but she didn't scream like she usually did, like someone was holding her in a tub of boiling water and then splashing her with it. I could already see progress. She was loving watching TV all day as this is not the norm in our house and by Thursday morning (4 December) her skin looked amazing!

Day 3
By Friday (5 December) I emailed Dr Aron telling him about the amazing transformation in Tomato's condition. He was not surprised. I also mentioned that although her Eczema was 90% gone, which was fantastic, the staph was still there, although to a much lesser degree. Unfortunately she did have 3 or 4 big boils which were erupting which were very ugly and painful (and disgusting). Dr Aron suggested that we give her a penicillin-based oral antibiotic. I mentioned that Tomato had finished a 7 day course of Augmentin in mid-November, so I was concerned and I wasn't sure if she was able to tolerate it again so soon. I loved his response. She can have more antibiotics if we feel it is necessary. He used the word WE! We were in this together, making decisions about the treatment together - that was comforting. He obviously understood my discomfort with using more antibiotics and after seeing some photos of the staph as per his request, he suggested that I bath her in a very diluted surgical scrub solution for 5 days to see how she goes. It had to be very diluted so as not to irritate her skin and cause a flare, but still be strong enough to kill off the bacteria. 

36 hours after first application
Here are the staph photos that I took on Friday and sent to Dr Aron. This was our third day into the treatment. The eczema is almost gone but she had about 150 "pimples" all over her body. The first is of her back and the bottom two are of her legs. The purple mark is a scar from a previous boil and the other a large boil. Both legs had boils.
On her back, very slight compared to weeks ago, but still there






  





New pimple on her neck




Dr Aron said that we should reduce the cream applications from 6 times per day to 4 times per day from Monday which we did, but we started using the bath surgical scrub immediately. 

Day 5
Most of the boils have disappeared. I couldn't find any new ones until yesterday when I realised that I wasn't using the scrub right into her hairline and lo and behold she got one on the back of her neck! Sneaky little buggers!! Today it is half the size. 

Day 7
2 days into using the scrub, I could see a huge difference and most of the bumps went away on her tummy. I bathed Tomato in my bath and I spent additional time on one resistant spot on her tummy. While I was washing it, I mumbled half to myself "go away horrible spot, why are you so determined to stay? Go away!" Tomato started laughing and said "Mommy that's my freckle!!" I stopped and had a good look and sure enough, I was trying to get rid of her one and only freckle on her tummy!!! Oh boy did we laugh. Honestly I had forgotten that she had that freckle! It had been hidden under the Eczema for so long, I didn't recognise her "normal" skin! She has told EVERYONE that story!! 
#embarrassing

Day 9
So far, Tomato has had 9 full nights sleep (apart from the playing instead of sleeping that she is now doing with her brother and sister because she isn't sore and itchy anymore!! I have to admit, I love everyday parenting challenges.) She no longer scratches in her sleep and when she wakes up, she opens her eyes and says "Good morning" without getting panicky and scratching herself raw before even getting out of bed! She is a completely different child. She used to be clingy and needy and now she is a pleasure. She is acting her age instead of regressing into baby language and today for the first time in 9 days she cried, not because of her skin, but because her siblings didn't include her in a game! I know that this may sound ridiculous to most people, but this is ABSOLUTELY WONDERFUL for our family. We are laughing and having fun like a "normal" family.

Tonight Bacon (age 6) asked why I was taking a photo of Tomato's back and I told her that I needed to see how much better her skin is getting. Bacon stroked her back and said "Oooh your skin feels just like my skin!" Tomato beamed with pride. The sandpaper skin was gone, her wish for skin like her siblings had eventually come true. 
Beautiful smooth skin on her back

Knees are still being stubborn (and ankles)

Legs still looking bad. Eczema mostly gone. Staph and previous scarring.
Day 12
I contacted Dr Aron and told him that most of the staph had cleared but the more resistant areas of Eczema were taking longer, otherwise her skin is silky smooth. He suggested we continue with the diluted surgical scrub in the bath for another week but to reduce the applications on all areas (even the clear areas) to 3x per day and the more stubborn areas to 1x per day (giving the more stubborn areas an extra creaming.)

Day 14
Christmas has come early this year!!!!  
2 Weeks later and Tomato's skin is looking amazing and feeling soft and silky! Honestly I did not think that her skin would ever be "normal." We have our little girl back. At long last, she may be able to enjoy what is left of her childhood. We know that Dr Aron does not promise a cure. But what he has done for my daughter's skin and for my family's sanity, is indescribable. He was right when he told Tomato that this is "magic cream." I have no doubt that our lives will be better and the suffering will be less. We will meet flares if and when they arise as we are now members of the Dr Richard Aron army. Together we will fight against this debilitating disease that steals childhoods and turns parents into crazy-people. 

I am so very grateful for seeing that video and joining the Facebook page. I really feel like I am amongst friends on that page. Friends who are further down that path than we are, but friends who are willing to assist however they can, because they know first-hand, what happens in families, whose children have been diagnosed as "just" having that pesky thing called Eczema.





"Eczema is not only a disease of the skin, 

it's a disease of the soul"



If you'd like to follow our progress click on this link: 3 Months After Starting with Dr Richard Aron 


Other links to blog posts about our journey with eczema:

Is Avene the Miracle We have been waiting for?


Nine Months Later with Dr Richard Aron

Meeting Dr Aron - A Dream Come True



Post Script - August 2015

One of the moms who was interviewed on the TV show (link above) agreed to give a quick update on how her son is doing today:
"It is great to see Dr Aron’s work being promoted and reaching as wide a public as possible. As our son was treated many years ago, I think his experience since his initial treatment will be of interest to those who are considering treatment now. 
I met Dr Aron 7 years ago when my 5-year old son, Aidan, was suffering badly from eczema. We had tried endless treatments from dermatologists, homeopaths, pediatricians etc over the years and nothing had ever worked for more than a few days relief.Dr Aron’s treatment, however, was like the miracle cure one sometimes read about and secretly hoped for for one’s own child. It was so dramatic you could almost see the eczema receding before your eyes. By the 2nd day of treatment he started sleeping through the night – something we hadn’t experienced in years! The relief for him – and for the rest of our family – was profound. 
More importantly, Aidan’s severe eczema has never returned in the 7 years since his initial treatment. Nor have we used the ‘Dr Aron’ cream at all in the last 5 years except for 2 short flare-ups (a week or less). 
Aidan was a child with an exceptionally high IgE and had many food and environmental allergies as a baby and young child. Dr Aron was clear that his treatment would not take away Aidan’s allergies, but would simply help his skin to cope. So Aidan remained on a fairly restricted diet for many years and he needed to bathe after playing on the grass or he would become very itchy. Two years ago, we re-tested Aidan’s allergies (with Dr Adrian Morris in Cape Town – someone I can also recommend), which confirmed that Aidan had outgrown his food allergies but remains allergic to grass and tree pollens. 
Aidan continues to have beautiful skin. We have looked for - and never found - any sign of thinning skin from the treatment he used so many years ago, which included a prescribed mix of moisturizer, cortisone (and initially) antibiotic creams. He plays both rugby and cricket despite remaining allergic to grass and is able to manage this by bathing after games and applying a simple moisturizing cream. Additionally, I still use a special laundry soap as regular detergent seems to be an irritant. Besides the above – Aidan’s life is completely normal and we remain deeply grateful for his treatment with Dr Aron!" - Julia Cain





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Wednesday, October 8, 2014

Hold Me Tight - RIP Kyle Du Preez Lowry

I have a wonderful friend, who I have known since school. We first sat next to each other in Standard 8 biology and instantly became friends. As much as we loved the friendship, our teachers were not as enthused because we were a bit disruptive in class. We laughed. A lot. Actually we laughed and chuckled so much that we both somehow took to being called Chucky and we have seldom referred to each other by our real names since then. Right now if you check my phone, her number is listed under "Chucky".

Fast Forward 20 years. We've both had ups and downs and I've mentioned in a previous post how we lost touch for a few years and would bump into each other from time to time and have a quick catch up. Then when I was heavily pregnant with Lettuce, we bumped into each other at the mall. She was buying an iPad for her son Kyle. He was starting high school the following year and the school was moving to iPads instead of text books, and I was slowly pushing a grocery-laden trolley. I remember her saying "Oh my gosh, when are you due?" and I said "12 days ago!!" We just laughed. I gave birth that night!

We are standing directly below the ball - it's enormous!!
Since that day we have met quite often, she has been a wonderful friend and is such a beautiful, fun, kind, friendly, giving, loving woman. She adores her 3 children and has the most positive outlook that I have ever come across. She started her own business in her early 20s, in a male-dominated industry and has won entrepreneurial awards for her efforts. Against all odds, her business is still thriving under her leadership. She has a beautiful home that she decorated herself and the welcome mat is permanently displayed. Just 2 weeks ago she bought the biggest mirror ball in the country and threw a massive party to celebrate and let everybody see it.

The ball at night
We were supposed to go to dinner with a mutual friend last week but we couldn't get it together. So we were planning for this week, probably tonight. We always have such a good time and usually laugh until we cry. And we always go to the same place, it's ridiculous but we love it.


So this morning started out as a beautiful spring morning, but very soon became one of the very worst days of my life. One minute I was finishing up with a bit of admin, promising my rowdy kids that I would hurry and take them somewhere special because they are on school holiday, and the next minute I was speeding towards a hospital, praying for my friend's son's life.

My friend's 16 year old son Kyle had been riding his scooter and was hit by a car. He was rushed to the Flora clinic. A nurse told us that she would keep us informed every 20 minutes and true to her word, she did just that. Firstly she told us that he was undergoing surgery as he had damaged his spleen and it would need to be removed as he was losing a lot of blood. He had also fractured his pelvis and had possible head injuries but these issues would be dealt with at a later stage, the surgeons needed to stabilise him first. We waited and prayed. The nurse came back and told us it didn't look good, we hugged our friend and prayed harder. Then there was some positive news, he was being sewn up and taken to ICU, the immediate family could see him.

The family went upstairs for a long time and when they returned, it didn't look good. We were all in shock. Kyle had not regained consciousness. The doctor called us and we all went up to the ICU where the surgeon told us "there is nothing more we can do, his injuries are too severe and he has lost too much blood." He had no blood pressure and he was being kept alive on the medication that they had given him, but it would wear off.  It just didn't seem real. If the doctor's words were foggy for me, I can only imagine what my friend heard as he delivered the words that would rip out her heart and change her life forever. I cringed as my friend asked, how long she had with her boy. The surgeon gave her approximately an hour. How do you say goodbye to your beautiful child? In an hour?  How can anyone be expected to do this? She kept asking if the surgeon was sure and he kindly answered each time, that he was very sure, there was no hope of recovery. Each time he said it, it jolted through me.

What struck me was that Kyle was lying there, with tubes and pipes everywhere and his head in a red, steel vice, so there was nowhere for his mother to touch him. His granny held his hand. Words are insufficient to describe the feeling that overcame everybody in that room as his mom lay over him and hugged his lifeless body and his parents, grandparents, uncle and friends said goodbye to this beautiful, precious soul, who has been a part of their family for what must feel like a lifetime. We left the family and shortly thereafter the kind nurse came to tell us that his pulse was fading and minutes later, he was gone.

8 October 2014, the day that started out as a beautiful spring morning, will be emblazoned on this woman's heart forever. The day that she held her beautiful, precious baby boy in her arms for the very last time, told him she loved him and that he was her angel and finally had to say goodbye and leave him in that cold, stark, hospital bed and to go on without him.

How does this strong, fiercely-loving mother go on?  Friends and family can hold you, pray for you and with you, but what could ever repair this mother's heart?  Parents are not supposed to bury their children for a very good reason, it's not the natural order.

I found this quote and thought it sums it up completely:



Incredibly, life goes on and after leaving the hospital, they had to go home and break the terrible news to Kyle's sister, 10 year old Megan, who was blissfully unaware of the life-changing events that had occurred earlier that day while she was at school.

A lesson to take from this, and I believe there is always a lesson, is that we should not take life for granted, nothing lasts forever and our children are lent to us for a finite time. Live your life to the fullest and enjoy each day that you are blessed to spend with your loved ones, especially your children.

I know that when I got home, I just hugged my BLT (children) close and cried and cried for the hugs that my friend won't ever have again.

R.I.P. beautiful Kyle Shaun Du Preez Lowry



Postscript

The above blog post was posted on the day of Kyle's death. This has impacted me much more than I had thought possible. Facebook immediately became flooded with images of Kyle and the most heart-wrenching messages from people who cared about him and knew the side of him that was shielded from his family. So many images and stories, that his family hadn't seen before, surfaced. This gave enormous comfort to his mom and sister.

On 14 October we all gathered together at Kyle's school hall to celebrate his life and bid him a fond farewell. 741 people were counted at the memorial service for Kyle. There were many school friends, family and people who knew and loved him. Kyle's life was all about lights and music and his mom arranged for a send off in true Kyle-style with lights, decor and beautiful music.


Gordon Harrison then got up to speak:

"Kyle, my boy.
It seems like yesterday that we realised mum was pregnant. Her winter cravings for gherkins on a train bound for France were a give away... we were there.
When you made your debut into the world with a distinct yellow tinge, we were there.
We have watched you go through all the stages of pre school, primary school and most of high school, we were there.
Our ski trips and Italian lunches (that we are still paying for  ) we were there.
Watching you grow into an amazing young man who along the way dealt with some really tough challenges. Seeing you become the little man of the house looking after mum and Meggie and watching you face the difficulties young adulthood brings and taking them in your stride, we were there.
Listening to you talk about your passions.. Lighting, sound, motorbikes...we were there.
On Wednesday when we received the call to say time was running out... we could not be there.
My boy, so many words left unspoken.
Know that we love you and are very proud of you and that you will be in our hearts always.... forever young.
All our love uncles S and G... Your favorite aunts/godfathers"


Kyle's godfather (and principal of his school) gave the eulogy which was so personal and beautiful. This is what he said:

"Today, I stand here as a godfather, an Uncle…a friend. Most certainly not as a Principal. You see, the only fights and arguments I ever had with my godson, Kyle, was as his Principal. So, today I am just his godfather. Many parts of this speech had been prepared in my head for his 21st. Today, I share them with you in celebration of his life.
I want to take you back just over 16 years. Picture this, a train, in the middle of the English Channel, the European winter of December 1997, we were crossing underneath the Channel as we were on a freight train transporting our bus that was returning us from our recent skiing adventures from the French Alps and in the middle of all of this Jo-Anne wants gherkins! Not one, not two…but an entire jar…. demolished, eaten, devoured. Less than 10 minutes later she was feeling ill. This ill sensation had started a few days earlier. Of course Jo put it down to the hundreds of gherkins that she had consumed over the past few days. Not a store in Courcheval, our ski village, had any jars of gherkins left. Gordon, called it first…Jo-Anne was pregnant with our dearest godson, Kyle.
Being born in winter is tough! Being born on the Highveld in winter is even tougher. It’s cold! On the 21st July a baby boy was born to proud parents Jo-Anne and Kurt Du Preez. To my great honour, he was given the name Shaun as his middle name.
Being the oldest meant that neither Mom nor Dad had any experience in the ‘baby’ business. From bottles, to changing nappies to feeding. So dear old Kyle was fed, clothed, changed and medicated, sometimes by trial and error. Picture the next scene. Jo-Anne and I were in the room with Kyle, not even a week or so old. I look at this little thing and start thinking that he has a pretty mean tan for a Highveld winter baby. On closer inspection, I see that his skin is a serious tinge of yellow. “Jo-Anne”, I ask with alarm, “does Kyle not look very yellow to you”? “Oh”, she replies, I thought all babies are this colour when they are born. Fortunately, it was a mild form of jaundice and a few days in the flirted rays of the winter sun soon sorted out his tan.
Within days of returning home from giving birth to Kyle, Jo-Anne was back at her company, Upstage, running things in her usual inimitable manner. Except this time, there was the pleasant sounds of a newborn baby boy gurgling and often not so pleasant sounds of him crying in the background.
His early years were at another private school. However, Kyle’s character never suited that school and despite our recent heated discussions on his current high school, he knew that his uniqueness suited the personality of Crawford. I clearly remember giving the then Principal, Jopie Maasdam a call and asking if he could make space for my godson in Gr 3. Jopie’s own tales tell the stories of Kyle’s exploits at Primary school. Every time when Kyle saw me after he moved to Crawford Fourways, he would thank me and tell me how much he was loving school.
Kyle was born to be involved in some form of lighting or sound work. From a very young age he was in the warehouses, tinkering with electronics and lights and sound systems. Most kids had jungle gyms, Kyle had scaffolding. How many of you remember coming into this very hall, only to find him dangling from high beam or straddled across the scaffolding several meters up.

We all have a fond memory of Kyle. Some, shared his passion for motocross. As we were going through photographs these past few days we realised how many motor bikes Kyle rode and just how much he enjoyed it and how good he was at riding.
The number of times that we as friends and family headed north to the delights of the European Winter to take on the French, Swiss and Austrian Alps are some of the best memories that we have. Kyle was not interested in skiing and like his Dad, Kurt, he was determined to snow board. This he did remarkably well. We happily traversed the many ski runs with Kyle keeping up continuously and some times very bravely. At one point on a particular run, Kyle, Gordon and I were separated from the rest of the group. We spent much of the day skiing across the Swiss border into Italy. Much to Kyle’s delight we stopped at a small family run hut. Our famous last words, “if you are hungry my boy, order what you want…” we have just recently paid off the loan taken out to settle his lunch bill. He was 10 years old.
Lately,it was his passion for DJ’ing and how he fought his Mom to try and convince her that it was absolutely OK for a 16 year old to be DJ’ing at Clubs. I was told explicitly that DJ’s are in their prime from 17 – 19 years old and he had no intention of missing his prime. Many of you here today will have heard him and I do believe that he was very good.
Kyle suffered for years from a form of arthritis. And after years of agony and operations he finally gained good health. This led to his newfound love for gym. Many of you know me well. Despite my lack of 10 full fingers, I am still useless at trying to play cricket and spin the ball or even bowl. Kyle, despite his hours and hours of playing in the swimming pool whilst growing up, tried water polo for two sessions in Gr 8 and carefully approached me to say that he was moving back to cricket. So when he told me this year that he was now hitting the gym, that really got me fired. I loved the fact that he was prepared to take the time and train with me. I loved the fact that I could keep up with him, barely. I loved the fact that we could exchange the different types of Whey Protein shakes, I loved the fact he would spot me and carefully glide the weights back into place.
His hard work in the gym was paying off. The now, infamous selfie of the triceps and deltoid extended flex in the change room at Virgin Active has graced dozens and dozens of Whatsapp profiles and Facebook pages. Of course, his ability to claim the top prize of Selfie King of Social Media is a given…Snapchat and Instagram will never be the same again.
So many of you will remember that out of 10 times that you saw him, he was probably smiling on all 10 occasions.
How do you talk about someone’s life in the space of a few minutes? I wrestled with that question over the past few days. I understand now, that you can’t. You just can’t. In the video that we put together, you will hear two songs. The first one is from City of Angels. A movie that Jo, Megs and Kyle watched again and again. The 2nd, Was one of his favourite songs.
Each and every one of us has special memories of Kyle. The number of you that have shared these with his family over the past few days has been just wonderful. Your care, love and support has been the biggest comforter for his family.
To his amazing mother, Jo-Anne. You are indescribable. I have watched how you have hosted so many of his friends over the past few days. How you are concerned for their well being and happiness and how even when you are grieving, you take the time to call one of his friends late at night just to reassure him that everything will be OK.
Like most of you, I never got to say good-bye. At first I struggled with that. But now, I understand that I did not need to say good-bye, he will always be with me and in the same way, with you."


Click here to view the video played at Kyle's Memorial Service - unfortunately You Tube removed the video due to the "Faded" song being used (Copyright issues)

Kyle's sister Megan was strong enough to read the following poem:

Never Alone
I feel you in the morning
When at first I awake
Your thought is with me
With each decision I make
You'd been around forever
Since the first breath I took
Now I have to go on alone
But for love, I need not look
Cause by what you bestowed
In our short time together
Will last in my heart
Forever and ever
Although you've left
And now walk above
I'm never alone
I'm wrapped in your love


Then his mom bravely stood up, took the mic and gave this tribute to her son:

"I am standing here living every parents worst nightmare and I am broken. But I am also the proudest mother anyone could ever be. I have received literally hundreds and hundreds of messages, emails, facebook postings and sms’s these past few days and the love that we have felt has been overwhelming and I thank you all for this and for being here today.

To Kyle, my ratbag, my sunshine and my Angel, you made me so proud. You were the most amazing and brave son, kind hearted loving big brother, gentle grandson and loyal friend and have left a huge hole in so many lives. Your passion for lighting and music will remain your legacy. The Angels in heaven have put down their harps to listen to your ‘deep house’ music and the Upstage flags lowered to half mast in your honour, and I trust that todays event is a fitting celebration for you, and testament to the very full life you lived as we never do things in half measures in our family – there is always drama, lights and music and a production!


The picture behind me is my favourite – you made me so proud with your lighting and told me that night what a cool mom I was and used this pic on all your social media for weeks. I know you had no regrets. You lived and died happy and with passion and I have no doubt in my mind that you are watching and listening to this right now from the sound room with a smile & giving me the thumbs up!

Looking through pictures of your life, you are smiling in every single one. This gives me peace knowing you were a very loved and happy child. And after meeting so many of your special friends who truly loved you, it is an indication of the person you were, as you attract back what you give. And speaking of attracting, it has been brought to my attention this past week just how many girls had a crush on you – even Megan's 10year old friends. Your energy, humour, kindness, and wholesome attitude, along with your need for fixing your hair, stealing my spray tan, eating egg whites and salmon sushi, xxx mints and blue Energades will be sorely missed. 

I know that you are always with us and that you have become Taylor, Megs and my Guardian Angel and my only regret now is that Heaven does not have visiting hours.


Thank you for choosing me to be your mom and may you fly with the wind in your wings, music in your ears and know you will always be loved and with us."


After the memorial service we were each given a white balloon on which to write a message to Kyle and send up to him. His grade sent theirs up together. It was so sad but so beautiful. 

So as friends and friends of friends say farewell to a beautiful soul, who graced this earth for a very full but very short period of time, his family are left to deal with the massive gap in their lives. The empty seat at the dinner table, his empty room and all of his things. They will be reminded by the "first" of everything without him - the first Christmas, the first New Year, the first birthday without Kyle. And slowly the hurt will fade from a raw wound to a scar that will ache from time to time but will always be a strong reminder of his life and what would have, could have, should have been. 


Click here to view the full memorial service





I am sending love and light to his family, especially his mom, who will suffer the most. As mothers we are the very first to feel our baby's energy and then the first to feel the physical movement within our bellies. When we first hold our newborn baby in our arms, we feel an overwhelming connection and we will be connected to our children forever. A mother's love and connection is greater than any other bond. Kyle's mom knew that something was not right on the 8th of October, it was her maternal instinct. That maternal love bond and energy that a mother and child share is not only felt on earth, but for eternity. Kyle's spirit will never fade.






Rest In Peace Kyle



Sunday, September 21, 2014

MY ALS Ice Bucket Challenge and Other Fun Stuff

Birthday Cappie
August is my birthday month and it's no secret that I like to spend a whole week celebrating. However this year it became a month-long celebration which was quite frankly, fantastic! I'm a Leo and Leos love to P-A-R-T-Y!  The pre-party started with me going to the 80's evening at Stones with some girlfriends. It was a blast (from the past!) We danced to EVERY song and sang until we were hoarse, well I was.

On my actual birthday, I was woken by Bacon, Lettuce and Tomato who were wildly excited to bestow large numbers of carefully-wrapped gifts upon me and I have to admit these 3 know how to shop for goodies I like!! Later I was taken out for a birthday brekkie by my bestie, followed by a family dinner at one of my favourite kiddy-friendly venues - yay! One of my fabulous friends sneaked past my home, while I was out, and dropped off a beautiful arrangement of flowers, imported chocs and other spoils. The next night was birthday date night with Hubby, who took me to one of my favourite restaurants. Then I had various lunches, breakfasts, picnics, coffee dates, dinners and other birthday treats for the next few weeks.

August ended off with a long-overdue trip to Harties (Hartebeespoort Dam). Our old stomping ground. We started off with breakfast at The Home of the Chicken Pie and then made our way to the dam. It was unbelievably windy. We went up the cable car and the view was spectacular! It was well worth the visit and the kids had a ball!! Tomato held a snake (ewww) and we walked around all the places that we hadn't been to in ages. We ended off at my favourite "farm stall" Jasmyn and stocked up on fruits and veggies and divine raw honey and nuts - yum. All in all it was a fabulous day!

 The next day was the best present by far, a gift from my nearest and dearest friends - my very first visit to see Madame Zingara which was truly amazing! The food was great (I had the signature steak with chocolate and chilli sauce), the service was very well executed and the staff and all the performers were there to have fun and to attend to our every need. The experience was fantastic! We danced and really had a ball. I was made to feel so special for my birthday month, I am so very grateful to be surrounded by such special, loving, giving people in my life.

Along with all the festivities, came the nomination that I had avoided like the plague - the ALS Ice Bucket challenge. Now don't get me wrong, the marketing behind this challenge was phenomenal and I now, along with a plethora of others, know what ALS is!! However, it was freeeeezing in South Africa and whilst I loved watching everyone else have a bucket of icy water dumped on their head, I was pleased not to have to do the same. So I was therefore NOT happy when I got the nomination but thankfully there wasn't a time frame specified, in which to complete the task. (I know the rules stipulate 24 hours but seriously, who is going to come and bust me, the Ice Bucket Challenge police?)  So I waited a while until the weather warmed up a bit, which was about 10 days later. It was still darn cold. In hindsight, I should have waited until September because the weather has gone from "dead of winter" to "middle of summer" in about 5 days!! We've had temperatures of 31 degrees C for the past few weeks. Tomato loved pouring water over my head.

Let me mention that it sounds like fun but holy cr*p it was cold!!! I literally couldn't take a breath, which took me by surprise so instead of the planned calm reaction, I spluttered and choked my way through it - lovely! It was not what I had expected. I thought it would be cold, but not THAT cold!

Here is the proof for you non-believers..........


Unfortunately along with the highs, came the lows. A friend of mine who went for a routine check for cancer, after she beat it 6 years ago, was told that some cancer cells were discovered. We were all shocked. We had joked about the rigmarole she would have to go through to have this strange test and planned some get-togethers to get her through the tests, never for a moment thinking that the results would come back positive! It makes me suddenly really grateful for the time I have and the wonderful people in my life, when the C word is bandied about. Medical science is amazing and fortunately the cells can be cut out but it is still an operation and a damn scary thought for my dear friend and for me just thinking about it. I am convinced that the surgeons will remove all the offending tissue and she will be back to her old self in no time, but it is frightening all the same.

I should do this...During the past month Dot-the-Domestic, the second mother to my children, and cleaner extraordinaire, became very ill and was unable to work for two weeks (shock-horror!!) So Lettuce and I became the "crew" at home to get the place back to ship shape condition. We washed, we wiped, we cleaned and had quite a bit of fun.

On one of the days, I was tidying upstairs and he was very quiet downstairs, which is always a sign that something is up! So I sneaked downstairs and found him like this.

Nap attack!
He was obviously making someting and then suddenly a nap attack!! It took me a while to find him amongst all the toys!

So even with all the challenges and scary moments, the last 5 weeks have been very full. Tomato has taken up Judo and is loving it, Bacon is practising hard for her school concert and Lettuce is being the brother that little girls love to hate. He torments them and sprays them with water, he trashes their room and is like a little hurricane in the house - a very cute hurricane because he is always sooo apologetic when he does something wrong or hurtful and kisses everyithing better.  But of course it doesn't stop him from doing the same thing again a few minutes later, but he is a real sweetie pie. I am blessed.

Here comes trouble!!










Sunday, August 17, 2014

Is Avene the Miracle that we've been waiting for?

As I write this blog post, I am filled with hope. I haven't allowed myself to hope too much because I have hoped and prayed for many years without any real result, but today I am breaking free from the negativity and allowing myself to hope once more.

It all started about a week ago when I got an unexpected email from a friend of mine.  Although we are big talkers, we hardly ever communciate via email, so when I received this mail with a link on it from her, I was a bit surprised. The link was to a blog post called Trip to Avene, France with Nirvana (click here if you want to read it). Immediately I thought my friend had taken leave of her senses, because if you've read my story from beginning to end, you would know that we are not exactly in the same league as people jetting off to France, as much as we'd like to be, so I was curious as to why she felt I should read this particular blog.

Aaaah, ok, it was about the bane of my life, eczema. If you haven't read my story about our family's ongoing war against this disease, please read Skin Deep (click here if you want to read it) (my first post, where I just vent to release my frustration) and then the less emotional Eczema Chronicles (click here if you want to read it) which I use as a tool for myself, to enable me to have a list of medications and reactions, which I update regularly so that I can keep track because often one day is worse than the next and days turn into months and I cannot recall what results we have had from which medications and treatements, it's kind of like an eczema diary.

If you don't feel like reading the two blogs, let me give you a quick update, Tomato (who has just turned 8 years old) struggles with this disease every single day of her life and although her skin is a lot better than it was a year ago, it is far from rosy living in our house with this invisible but ever-present imposter that is slowly stripping away her childhood and my sanity. Last week she was sent home from school because she had scratched herself until the blood was dripping down her legs. The week before, her best friend got a rash and quickly informed their classmates that she had "caught" Tomato's skin disease, so nobody would play with her and she came home in tears saying they called her "blood girl" so she had to hide in some bushes to get away. Tomato has always suffered from boils which occur all over her body because of the bacteria happily entering her broken skin from the open wounds of scratching. Our poor little girl is desperate for warmer weather because her skin is not so dry in warmer months, but she is also petrified of the thought of wearing short socks again which will show the open sores and dark purple scars on her legs which children think are chicken pox. She is on a plethora of medicines to assist her with not only her skin but also the anxiety disorders that have surfaced because of it. There, you're all caught up!!

So for the past few years our family has just been going through the motions from day to day (like walking through thick mud, it is hard to keep on), each day looking similar to the previous one, with no real solution in sight, with me trying to keep the wounds and scratching at manageable levels by using cortisone creams, prednisone tablets and antibiotics. I hate that she is having so much medication pumped into her little body day after day, but every day is still darn uncomfortable for our little girl and sleep is a distant memory for all of us, so we have no choice. Nothing, but nothing heals her skin. Shockingly, we also pay over R100 000 per year on specialists, medication, various therapies and treatments and special lotions and potions that are not covered by medical aid.

BUT WAIT!!!! 


Is that a light at the end of the tunnel? Or is it another oncoming train?

Dare I hope...... again?  I told Tomato when her eczema began that I would never give up looking for a cure and I never will, but boy it's getting more and more difficult to visualise her skin without the red welts and scabs that I see every day, tormenting her and making her more and more insecure and introverted. I hardly recognise this little girl living with me, she used to be so vibrant and full of life but now she is just a ball of pain and itching. Her life is very hard and there is nothing that I can do to help her.

Back to the blog that I mentioned earlier........ it was very interesting, it referred to a place in France called Avene which boasts water that has healing properties, especially for irritating skin conditions like eczema. The lady who wrote the blog was on her way to Avene with her little girl, who is the same age as Tomato. Reading her story, which has been so very similar to ours, I was intrigued. The blog was new and although I seldom comment on blog posts, I felt compelled to tell this lady that I understand her excitement at being given this opportunity and that I feel her pain as I have been traversing a similar path and that I wish her all the best with this treatment for her little girl, as I know the heartache of watching your child suffering and not being able to help them. I know how this impacts a family and unless you've lived through it, you cannot possibly understand the emotional turmoil. So I left my message and a link to my Eczema Chronicles blog post and made a mental note to check up on how the treatment was going.

A few days later I was contacted by a lady from a company called Pierre Fabre, asking to meet me. This lovely lady had read my message on the blog and then followed the link and read our story on At Home with my BLT. Pierre Fabre is the company who have sent Nirvana and her mom Traci to Avene for the hydrotherapy treatment!!

We agreed to meet the following day. In the interim, I was sent this link which blew me away and started me hoping once again that maybe, just maybe, this is the miracle that we have been hoping and praying for.

To view the video click here 

We met at a local coffee shop and I was amazed by the amount of clinical data that backs up the claims of this healing water. I received volumes of literature to read though (over 300 different studies have been performed on the water) and I even felt myself having a connection to the unbelievable principles of the company. The lady I met was filled with passion for both the company as well as the brand. I learned that the Avene products would be launched in South Africa next year, but I was getting a bag full of Avene products to try immediately on Tomato. The pack included 2 spray cans filled with the thermal spring water, packaged at source, in Avene in highly sterile conditions. I was amazed.



When I got home, I started reading and reading and reading. I then started googling. I searched and read for hours and really battled to find any negative reviews about these products, but there were plenty of positive stories. The products have been available in Europe, Australia and the US for many years and they have so many different uses from soothing diaper rash to sunburn to even helping with healing newly inked tattoos!

When Tomato got home from school I told her about my meeting and showed her the video. She was quiet for a bit and then she went wild "I'm going to France. I'm going to get my skin better. This is my miracle." I explained numerous times that we weren't going to France to the hydrotherapy centre shown in the video, but she would hear nothing of it, she said she's going and that is that. The part where the little girl is crying and saying she's sore made a huge impact on Tomato. She has always told me that nobody else knows what she goes through, but now she knows that she is not suffering alone. It's pretty clear that she believes in the law of attraction because she has told everyone she sees that she is going to France!!

Usually she won't allow me to put ANY new creams onto her skin but she LOVED the fact that she was spraying healing waters onto her skin and allowed me to bath her in the gel and put on the Avene TriXera+ moistening balm after her bath!! The following day she took the water to school and insisted that her teacher allow her to do a "show-and-tell" to the class, even though it wasn't the day for it and she hunted down another little girl in her school who has bad skin and sprayed some healing water on her too!! I have never seen her so excited about anything before!!

So I am putting my hope and faith in this new product. I know that medications have their place, but I would much rather use a perfectly balanced water that is rich in calcium and magnesium and products made from it, than the cortisone creams and tablets and antibiotics, that have become so commonplace in our home.

For the first time in many years, I am excited for tomorrow.




Postscript - December 2014

As much as I love the concept of Avene and the healing waters (which work wonders in bottle form on red, inflamed eczema for cooling purposes), we had to wait until the summer in France for them to re-open and we were desperate. We were planning in 2015 to pay the approx. 
R60 000 for Tomato and me to journey to Avene, but we were going to have to raise the money first. Then we found our answer when we least expected it.....

Click on
 The Day I Found Dr Richard Aron and our Healing Journey Began blog post