Tal’s Journey: Supporting a Happy Little Boy with Big Challenges

Meet Tal. He’s 4 years old, full of giggles, and has a very rare condition called OCNDS. Life is tough for him in many ways, but he lights up with music, cuddles, and his twin sister by his side. We’re fundraising to give him the therapies, equipment, and support he needs to thrive, while also supporting the CSNK2A1 Foundation 💚💙

Hi, my name is Tal 👋🏼💙


I’m 4 years old, and I was born with a very rare genetic condition called Okur-Chung Neurodevelopmental Syndrome (OCNDS). It’s so rare that most health professionals have never heard of it. OCNDS affects me in lots of ways, every single day.

Because of OCNDS:

* I have epilepsy

* Eating is really difficult, so my food needs to be mashed or blended to make sure I can swallow safely.

* I’m severely sight impaired, so I experience the world differently.

* I have low muscle tone, which makes even the smallest movements hard work.

* I can’t crawl or walk yet.

* I’m non-verbal, and find it difficult to communicate.

* My body struggles to regulate temperature, so I’m often too hot or too cold.

* I have severe global developmental delay, and my brain is different — so I need lots of extra help to learn and understand the world.

But here’s the most important thing about me: I’m the happiest boy. I love life, I love to giggle, and I light up when I hear music and songs. The very best part of my world is my twin sister, Mabli 💕. She’s my biggest fan - so caring and protective, always ready to sing to me, bring me toys, or give me a cuddle 🤗

The NHS gives me brilliant care, and I’m so grateful for all the help I already get. But sadly, the NHS can’t cover everything I need.

Your support will help me access the equipment and therapies I need - including, hopefully, a specialist all-terrain buggy that will give me the support and freedom to explore beaches and off-road places like other children my age. Each piece of essential equipment costs thousands of pounds. It will also help fund specialist support such as extra physiotherapy and horse riding (RDA), helping me build strength, improve my balance, and continue making progress.

It will also make room for the little things that bring me joy, like music and play, which are just as important in helping me grow, learn, and enjoy life.

To help raise funds, my dad and a group of amazing friends have walked 60 miles of Ceredigion coastal path from Ynyslas to Cardigan 🌊

They were incredible! Every step was for me, and for other children like me.

Funds raised will be split 50/50 between:

* Helping me get the equipment and therapies I need.

* The CSNK2A1 Foundation, which supports vital research and families worldwide affected by OCNDS.

Every donation, no matter the size, makes a huge difference. And if you’re not in a position to give, sharing my story with your friends and family is just as powerful in helping us reach those who can ✨

Thank you for reading my story, and for helping me on my journey. Your kindness means the world to me, my sister Mabli, and our family.

With love,


Tal 💙