ausEE Inc.

a charity dedicated to improving lives affected by an eosinophilic disease

Henry H's Story

My son Henry was diagnosed with EoE at 11 months old. He was taken off all foods and we struggled to find anything that he could have until he was 3 years old. He never slept. He was always in pain. He was only on elemental formula for years. I cried all the time.

We started with carrot, apple and pear and those where his safe foods for a year. It’s incredible this allergy journey. You find that you are surprised by a stranger’s kindness and stunned by some people's indifference or harshness. You worry all the time. Worry if they are safe, worry if they will be invited to that party, worry if they will eat something they should not. Worry if they are getting enough nutrients. Wondering if you are doing the right thing.

It does get easier as they get older as they understand what they can eat but then it gets harder as they realise what they can’t eat. The anger. The bitterness. ‘Why can everyone eat and I cannot?’ Slowly through the years we celebrated gigantic milestones. Adding wheat and dairy into his diet was gigantic. But being able to eat hot chips at McDonald’s may have been the greatest day on record for my family.

Now I sit here 10 years almost exactly post diagnosis with a full menu – he can eat anything and it just hasn’t sunk in. We passed his last allergen, soy. I do not know how it’s happened but we will enjoy every moment of it. 10 years of making 2 – 3 meals a day. Baking for everyone else’s party. Always having safe foods in all my bags that I bring out. Making sure that there’s a McDonald’s close by just in case. Carrying formula. Having enough medication when we travel. You know how it is. Now I love watching as he tastes something new for the first time. Watching his face. It’s just amazing.

I share this because I understand your pain and I understand your joy. And I hope I bring hope. x

Story shared by ausEE Vice President, Mercedez (Henry's Mum); April 2019

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