We need to create a downstairs bedroom and wet-room for Jacob as well as ramp access to the front of the house and level access to the garden. Jacob needs a more accessible home where he can move around safely and easily and we will be able to continue caring for him at home when he gets older and much heavier.
This would absolutely change our life and help us so much.
We struggle on a daily basis taking Jacob up and down the stairs, a bedroom and wetroom downstairs would mean the world to us (and our backs!!) it would benefit Jacob so much. He loves bath time, its his favourite part of the day! He splashes like mad so we can only put a tiny bit of water in the bath as the water leaks through downstairs into our kitchen, to give him the freedom of a wetroom where he could splash until his hearts content would bring him so much joy and happiness! Giving him a bedroom that he is able to get to by himself would give him so much independence that he so desperately needs. At the moment we are carrying Jacob to his bedroom and the bathroom – we don't know how much longer we will be able to do this for. My husband and I have always said we would do it for as long as we can but he is getting very heavy now at 5 years old and it's taking its toll on our back and joints.
We have a stone driveway and it is near impossible to get him in and out of the house. His chair gets stuck in the stones and I struggle every time I leave the house. A ramp access would be incredible and help us massively.
Jacob was born with a rare genetic condition called NEXMIF/KIA2022, this causes Jacob to have a severe global developmental delay, learning disabilities and epilepsy.
As a baby we noticed Jacob wasn’t hitting milestones – he wouldn’t interact with people or play with toys, he couldn’t hold his head or sit unaided. At around 4 months old Jacob was having clusters of seizures called infantile spasms. These were misdiagnosed for reflux until he was 8 months old, at that point Jacob was sleeping the majority of the day and lost the ability to smile or giggle. He was put on an intensive cause of medication and we managed to control them. After this we were sent for Genetic testing and when he was around 3 years old we got his diagnosis of NEXMIF.
Jacob was like a newborn baby at 9 months old, we had a meeting with Jacob’s Doctors and specialists who advised us ‘not to expect much’ from Jacob’s future. It was that moment I made it my goal that he would prove them all wrong and that’s exactly what we have done!
Fast forward to now and Jacob is the happiest loveliest little 5 year old. He loves everyone and everything… water, grass and nursery rhymes especially! He has learnt to walk but needs a lot of support – he cannot walk outside or far, he cannot do stairs either…BUT he walks around his home and school happily and he loves it! Jacob is non verbal but is a keen Makaton signer! He is learning more and more everyday! Jacob’s smile can fill a room with sunshine, his giggle is infectious and his loud, flappy, quirky ways makes everyone fall in love with him as soon as you meet him!
He is our little superhero and we couldn’t be prouder of him!