Awareness for Andy

Kristin and Damo's first born son Andy, aged 3, suffers from a very rare disease called Eosinophilic Esophagitis (EoE). WHAT THE....right???? Them some big words AND when you google, to try and learn more about it, you get a whole lot more big words in medical mumbo jumbo that makes little sense to the common reader and you kind of stop reading and walk away with the understanding of "ok so he can't eat some stuff" and, if your anything like I was, you probably don't really think it's a big deal.

Earlier this week when Kristin messaged me to see how I was, to see how my holiday went, to see how I was coping with life in general I asked her what she was doing. She was in the hospital, with Damo and Andy, for Andy's endoscopy. A procedure that he's had every six months since his diagnosis where he is put under a general anaesthetic and has a biopsy and a scope put down his throat to see if there is any activity in his Oesophagus. This particular visit to the hospital he was also having his tonsils and adenoids removed and they would spend the night in there.

So here is Kristin, sitting in the hospital with her three year old son, while he undergoes his fourth general anaesthetic in his short three years on this earth...and she's checking to see how I am! That's Kristin, always putting everybody else first!!

I felt quite mortified. Mortified that I had no idea Andy was even going to hospital. Mortified that I didn't know that he had this scope every six months and will continue to have them. Mortified that I knew very little about the disease my good friends little boy has because that some big words have prevented me from learning about it. Mortified that, truth be told, I just thought it was something he would grow out of and I had no idea the impact it places in the lives of my friends. Since that conversation I have muddled through some of those big words and educated myself on the severity of this disease and it's so much more than "he can't eat some stuff".

"Some stuff" includes wheat, dairy, eggs, soy, nuts, shellfish...to name a few. He is not anaphylactic. Eating the foods will not kill him. That's Kristin and Damo's saving grace when they have to watch their three year old son struggle to swallow, endure immense abdominal pain or violently vomit because he's had a reaction to something he's eaten. Their only saving grace...it won't kill him. He has been on an 'elimination' diet since he was 15 months old. Prior to those 15 months doctors had deemed his violent vomiting as being "reflux". He is currently on formula so his daily calorie intake is high enough for him to be healthy and keep growing. He is reluctant to eat at all for fear of vomiting and pain.

So the as the job of his parents Kristin and Damo, every single minute of every single day, are monitoring what he eats. Eliminating foods, reintroducing foods and all too often telling him he can't eat what other three year old's are eating. Whilst, at the same time, trying to encourage him to eat what he is allowed to eat because the pain food has caused him in his little life to date, naturally, makes him less inclined to want to eat through fear of being ill. They have to prepare and take food with them everywhere they go because he can't just pick up a biscuit or have a piece of cake with the other children. They have to watch him cry when they say "no you can't eat that" and just like the abdominal pain and the vomiting they are powerless to stop his sadness when he can't be like all of the other children.

I told Kristin I am coming home in August to run the Perth City to Surf, I asked her if she'd run with me and suggested we got a team together, some t shirts and run in honour of Andy. In honour of the silent daily battle Kristin and Damo endure and use it as an opportunity to help raise awareness of his condition.

Kristin being Kristin said "there are so many people worse off than us" and this is true but it doesn't make it any less relevant. It doesn't make it any less difficult and challenging for them and just because there is a huge lack of understanding of what the disease is doesn't mean it's not severe. Me being me said "put yourself first for once Kristin, we are doing this".

So I have created a team called "Awareness for Andy". For everyone that loves Kristin, Damo, Andy and their youngest son Zac....I ask you to please join us on August 28th for the Perth city to surf. 42k, 21k, 12k, 4k.....walk, run or crawl. Sometimes when life gets tough it is the power of human spirit that pulls you through. It is the power of positivity helps more than people really give it credit for.

For every single parent that knows Kristin and Damo and has silently thanked their lucky stars that their child doesn't have such a disease I am asking you to show how thankful you really are and at the very least put on a t shirt and walk 4k on the 28th of August. I would like to emphasise that this is not about being fit, it's not about your ability to run, it's not a race, it's about supporting your friends. You can walk at whatever pace, you can push prams....it's about participating. We all know that Kristin and Damo would do it for us.

To register go to this link:

https://secure.tiktok.biz/register/default.aspx?EventID=perthcitytosurf&Edition=2016

Search for team "Awareness for Andy"
Password is "Andy"

If you would like to donate to the raising awareness for Andy's condition, or ask other's to support your participation you can do so here.

What better way to spend a Sunday...doing something for someone you care about, releasing some endorphins and having a beer with your closest friends.

See you on the track!