Just4Children are fundraising to support Mabli to provide her with the life changing therapies and specialist equipment she needs to thrive.
Shwmae, hello… my name is Mabli. I’m a very happy little girl from Camarthen who loves skiing, splashing in water, and exploring outside in my Wizzybug. People say I light up every room, but life isn’t as easy as it looks.
After lots of tests, Mammy and Daddy were told I have GAND syndrome — GATAD2B Associated Neurodevelopmental Disorder, a condition so rare that only around 450 people in the world have it. It makes moving, eating, learning and communicating much harder for me.
I have Global Developmental Delay, Hypotonia, Severe Learning Difficulties, Apraxia of Speech, Pica, feeding difficulties, allergies, challenges with secretions, Ventriculomegaly and very limited white matter, the brain’s communication network. I need someone watching me all the time to stay safe.
I’m non-verbal, so I can’t talk yet. I make happy noises, but not words, and sometimes people stare when I try to communicate. I’m just doing my best.
Every week, I spend hours in appointments being poked and prodded. Sometimes “family time” means another hospital trip. I can’t remember the last time Mam and Dad had a full night’s sleep, I need them day and night.
My Mam makes my life look lovely on Instagram… but behind the scenes, it’s a constant fight, and I’m a work in progress every single day.
People often say “there’s lots of support”… but with a condition this rare, support is actually very limited. My parents fight daily for even the simplest things, and many times the answer is still no.
I need weekly therapies and equipment that the NHS will not provide. Me and my family need this everyday.
Thanks to everyone’s amazing help so far, I’ve made huge progress! I can now crawl and I’m trying my hardest in my walker. Your support really does change my life.
We will be using the donations to cover vital physiotherapy, hydrotherapy, intensive therapy’s and accessibility equipment.
Mammy had to stop working to care for me, so we live on one income and a small allowance.
We’re fundraising for Just4Children so I can have the same chances as other children, to grow, learn, feel safe, be included and be happy.
Diolch for helping me and my Mammy and Daddy.
Follow Mabli on Instagram
