Alfie Choules

Alfie’s story

Let me introduce you to Alfie. He is my nephew, son to Natasha and Dave, brother to Connie and Kaleigh….our very own Ginger Ninja.

In the Summer of 2022 we were all on holiday in Spain when he became very poorly. We thought maybe it was due to the air conditioning, his cough was horrendous and he had a high fever. He was only in Spain for 1 week so we assumed that when he got home he would get better. By October he had lost a significant amount of weight, but the doctors said it was his hormones and diagnosed him with anaemia. In November he turned 16, he was not at school and was not able to leave the house.

His health slowly got worse, so much so that Natasha had to give up work to become his carer and invest her time in finding out what was wrong. It was becoming clear that the problem could not just be that he had anaemia.

Fast forward to January ‘23. He collapsed on the way to a doctors appointment. He was rushed to Medway hospital and as a result blue lighted to St Thomas’s hospital in London. He was suffering with heart failure, but nobody knew why. Finally after 2 weeks he was diagnosed with a rare genetic disease known as Danons. He was sent home with a concoction of 14 different meds which needed to be taken daily, multiple times a day.

He had regular hospital appointments at St Thomas’s and was placed on the waiting list for a specialist heart hospital.

Finally in August, he was given a room at Herefield heart hospital where he will stay with Natasha for the foreseeable future. He is on the waiting list for a lung and heart transplant. There is no cure for Danons but without these transplants he will not survive.

Obviously, we want to give him the best life possible even if it is from a hospital bed. He is so strong and positive, and we often talk about all the wonderful things he would like to do. With the help of a Go Fund Me page we hope to make his life more comfortable and fulfil his dreams.

If you would like to know more about Danon Disease please use the following link:

https://www.danonfoundation.org/