Hey everyone,

I'm Isaac, 8 years old, and my life is different from most children my age.

At School, my learnings looks different. My targets are much lower than other children my age. I’m currently working at around 3-4 years old. I’ve Recently been diagnosed with ASD (Autism) which is common with WHS also, so I struggle daily to regulate my emotions resulting in lots of meltdowns.

I have to have certain daily routines and this is very precise. I struggle to retain information so for instance I sometimes forget my friends/relatives names, I can even forget what I ate for lunch.

Communicating can also be a struggle, and this is where my parents help with prompting me. I get very mixed up with my sentences and usually say the opposite to what I actually want or need.

I'm very sensory, therefore I struggle to have a haircut or have my nails cut etc.

I love to have my hand tickled and that’s what I find helps me regulate throughout the day if my parents tickle it.

I need help with all my basic care. So toileting/bathing/showering/washing/getting dressed etc. I fully rely on my parents helping me with this.

I have very low muscle tone, so the simplest of tasks for a normal 7 year old child is difficult for me to complete. For instance I struggle walking up and down the stairs and I will crawl like a baby using both arms and legs. I can only walk short distances and I suffer regularly with severe pains in my muscles and legs. I use a stroller to get around long distances.

I have no collar bones. I have got a large open fontanelle and distinctive facial features. All of these will probably lead to more surgery in the near future.

I have severe sleep apnea and breathing difficulties through the night. Waking up many times throughout the night.

I had a heart defect and when i was 3 years old I underwent open heart surgery were I was put on a bypass machine to keep me alive. This has been repaired now but I still have regular check ups.

I'm not hearing that well, so i'm wearing hearing aids in both ears.

I struggle with food as I have a high arched pallet therefore the food regularly gets stuck to the roof of my mouth causing me to choke. I also store food up there, so my parents are forever checking.

I have dental problems. I have lots of missing teeth and my teeth do not fall out, therefore they have to be surgically removed. I'm unsure if I will ever have adult teeth in the future.

I’m missing 78 genes from chromosome 4, and because of that, I see a lot of doctors and specialists regularly.

My body needs extra care……..Oh!....and I’m color blind too.

But here is the most important part of my story. I am surrounded by love. My mum Melissa and my dad Alan are my biggest supporters. They help me with everything I can’t do, and they never give up on me. Even on the hardest days. My sister Florence makes my world brighter just by being in it. I smile a lot. I laugh a lot. I find joy in the smallest moments.

When I listen to music or play my guitar, the world feels easier to understand. My guitar is one of my favourite things. It lets me express myself.

I also love football, especially Liverpool FC. Watching them, hearing the songs, feeling the excitement. It fills me with joy. It makes me feel connected, like I’m part of something big and special.

My struggles don’t define me, my happiness does. People say my story is sad, but I don’t feel sad. I feel loved. I feel safe. And I feel proud of who I am.

If my life teaches you anything, I hope it’s this:

Joy can exist alongside struggle and sometimes, it shines even brighter because of it.