My Name is Jack and I am an Avenger ❤️

Hello my name is Jack, I am 19 months old 15.5 corrected as I was born 10 weeks early! When i was born it was noticed immediately that there was something wrong. On my first and second CT scan they found a thing called PVL it’s some damaged brain tissue. Back then the doctors told my parents if I made it I’d be severely disabled, I wouldn’t walk talk or communicate. They never thought I’d make it home.

Fast forward a few months and my mam found me blue and unresponsive in my cot and rushed me to hospital. After a short admission I was diagnosed with epilepsy. We went home on medication but with in weeks I gained a second form of epilepsy called infantile spasms. Seems I can’t catch a break.

This was when the doctors did some more genetic tests and they found me to have a genetic disorder called an SZT2 mutation. This mutation is a devastating diagnosis because most of the children that have it have an uncontrollable form of epilepsy it’s medicine resistant. It stops me from developing at a normal rate. I have Hypotonia which is a low muscle tone. So I am not able to hold my head up on my own or sit independently. I even ended up in intensive care for a week! I am immunocompromised meaning I can’t fight off bugs like other children and I get very sick. So far I have had about 14 admissions to hospital and A LOT of seizures. I’ve also had to have a feeding peg fitted as I wasn’t able to swallow liquids.

This is where you guys come in. My mam needs to make our house a little bigger to store my special needs equipment we barely have any room to move at the moment. I’ll need a stair lift to get into my bedroom and a toilet down stairs so I can learn to use it.

You see NO ONE thought I’d get this far but here I am. I’m here I’m starting to roll over and reach for things. My eye sight is bad as I have a CVI visual impairment but even that doesn’t stop me! You see I’m an Avenger and I’m not going anywhere. I just need some help to make my life as easy as possible then I can show you all what I can REALLY do! Can you please help my mammy to help me?

Any donations even 1 euro will help my mam in making our house bigger to give me more space to get around, ramps to learn to walk. A safe space for me to play. We’ll take building hours anything at all to help me! My mam & dad will be forever grateful so please help them to help me! My name is Jack and I’m an Avenger!

#JackTheAvenger

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