top of page
MEET OUR FAMILY
There are fewer than 200 children currently diagnosed with H-abc, below are some of their stories
The 22nd July 2019 is a day we will never forget, the day our little boy was diagnosed with a progressive neurological disorder called Leukodystrophy, he is 4 years old. Frankie was always slightly delayed when meeting milestones...
Sofia is the happiest and most resilient 9 year old you’ll ever meet. She was 3.5 when she was diagnosed. Nothing ever gets her down. Whatever she didn’t have she made up for in her ability to adapt to all situations thrown …
Our world collapsed that morning in Cheltenham, when the pediatrician informed us Aggie had a rare and degenerative disease for which there was no cure. And ever since, powerless, we have watched our spirited Agatha...
A lot of people dream about a happy family, with children roaming around the house, laughing and turning everything upside down. It was our dream, as well, to give our daughter the chance of sharing life with a sibling, while enjoying...
Connor is our perfect little guy. He is so cute and wonderful. He has his mom’s luxurious hair, and his dad’s charming dimples. He is brave and tough, and super-sweet. He was a good baby,...
Bethany is almost 18 and we live in Essex in the UK. She was only diagnosed in 2017 after many years of tests and procedures. Concerns were first raised when she wasn’t able to sit unsupported at the age of 8 months old…
Noah was born in 2016 and within a few weeks it became apparent that something was profoundly wrong. He was in a great deal of pain, twisting and contorting and struggling to feed. Testing revealed he had H-ABC when he was just 5 months old...
Hi! My name is Tabriz and I just turned 6. I live on the little French island of New Caledonia in the South Pacific. I live with my 3 sisters, 2 brothers and my Mom (1 dog, 1 cat, fish and 2 rabbits)....
bottom of page