When my son Jboy was young, failure to thrive, not sleeping and always crying, we had no idea what was wrong, I never thought life would get easier or better. I never really hoped that he would achieve dreams we just hoped he would live and grow well.
Now Jboy is 16 years old, is 5 foot 10 and weighs 64 kilos. Something we thought would never happen and it has been (and still is) a struggle getting enough calories into him as an athlete on almost no food. Jboy is a dedicated competitive swimmer, doing 2 gym sessions and 7 swim training sessions a week. My son does all this whilst drinking about 2 litres of elemental formula a day as he only has 16 safe foods in his diet. This is a photo of him 2 weeks ago after winning his age group in the 2.2km Byron Bay ocean swim!
Ten years ago or even five years ago I would never have dreamt this would happen. We just wanted to help stop the pain he lived in every day.
Rebecca - Jboy's Mum
We are grateful that Jboy also has some amazing friends watching out for him and so thankful he gets to experience being a ‘regular’ teenager. Last weekend he went to a party with 30 kids sleeping over at a house about 10kms from our house in their tents and swags. The parents were so accommodating that they did not do breakfast until 9am so that Jboy could stay until 8.30am because the smell of eggs cooking could set off an anaphylactic reaction due to his severe egg allergy. The parents were really relaxed about him being there (he freaks most people out once they know how sensitive he is) and his friends are so aware of his medical issues that the girl having the party even went home during the week and told her dad that he couldn't mow before the party or Jboy won't be able to go and she wasn't even asked to do this for him. How great is that!
I share this story to give hope and inspiration to those of you who are just starting this journey and feel like you have little direction or hope. Through the support of ausEE we have learnt so much about kids with EoE, medications, living with a child who eats restricted food and is formula dependant.
Yes Jboy still has days he is too sick to get up and yes, he has weeks he doesn't go to school but through encouragement and determination he always gets back up and goes again. So never stop dreaming for your child and always encourage them to go for it when they are passionate. Our kids are amazing resilient people who can go and achieve amazing feats!