This is Jacob and he is now 8 years old. We started this page when Jacob was only 5 years old and we have been raising funds and grants to get to this point! We are finally at building stage!!!!!

Jacob was born with a very rare genetic disorder called NEXMIF/ KIA2022/ XLID98. We had no idea when we were expecting Jacob that he had a disorder, it was a surprise…. That’s ok as we like surprises!! Jacob has a De Novo condition which means mum and dad are not carriers, it’s just a random chromosome that was duplicated when he was concieved. He was always suppose to be our rare bear!

XLID98 causes Jacob to have a severe global developmental delay and severe learning disabilities. Jacob also has epilepsy and is on medication to control his seizures. Jacob has sensory processing disorder and behavioural issues as well as other complex health needs. Jacob is able to walk about but not far and certainly not without support from an adult. He cannot go up or down the stairs and at 8 years old you can imagine the backaches we get!

Jacob lives at home with his Mum Sophie, Dad Iain and little sister Millie. Sophie and Iain carry Jacob (all 4 stone of him) up and down stairs on a daily basis for the bathroom and his bedroom. Jacob has behavioural issues and tends to hit out or kick so it can be very dangerous using stairs. Jacob leans his full body weight back on the adult supporting him up the stairs which is extremely dangerous, mum and dad have to sit down with Jacob on their lap and bump him down the steps to come down!

Jacob needs his home to be adapted to meet his needs, as he gets older and heavier his parents want to continue caring for him but are so worried they will no longer be able to carry him up and down the stairs and they want to be able to care for Jacob at home safely and with the dignity he deserves.

A bedroom and wetroom downstairs would give Jacob the independence he so desperately needs and will change his life for him and his family. Jacobs favourite thing is water, he loves splashing in the bath more then anything! We want to be able to give Jacob the freedom to splash as much as he likes without worrying about the the water leaking into the kitchen or flooding the bathroom! Also not having to lift him in and out the bath would save so much back ache!

Jacob is the happiest boy and his smile shines brighter then the sun. His flappy hands and excited noises makes everyone fall in love with him. He is so cheeky and has such a love for people... and ducks!

We got told not to expect much from Jacobs life, that he wouldn't be able to do much at all... he has proved everyone wrong! We never gave up and after endless therapies, physios, messy play and sensory sessions he amazed us all! He has gone through so much and achieved amazing things in his 8 years of life. He is an absolute hero!!

Jacob will need full time care for his whole entire life, if we can provide him with a accessible, safe home for him we can continue carrying for him for hos whole life!

Help us help him 💚