Jacobs 5 for 5!!!! 

So Jacob is going to cycle 5k on his trike and nominate 5 people. Those 5 people will have to run, walk, cycle, swim 5k then donate £5 to this page .... then nominate 5 more people! Then so on and so on! 

Let’s see how far this can go!!! 💚

You don’t have to be quick, it’s not a race. You don’t even have to do it all at once as long as you do 5k! 

Jacob is 5 years old so 1k for every year of his life! 

Take pictures! Take screenshots of your route! Share your journey with us!! Use the hashtag  #Jacobs545 So we can see your amazing efforts!! 

Let’s SMASH Jacobs fundraising 2021 with a fantastic start!!!

A little about Jacob

Jacob is 5 and a half years old, he was born with a very rare genetic condition called NEXMIF/KIA2022. This condition is so rare that there is approx 100 cases that we know of worldwide, this also means that there is lack of knowledge and research to his condition. 

What we do know is that his condition causes epilepsy and has to take medication every day and night to prevent seizures happening. It also means Jacob has a severe global developmental delay... he is like a 1 year old in a 5 year olds body. Jacob has learning disabilities and sensory processing disorder. Jacob cannot walk far without support or cannot climb up or down the stairs. Jacobs non verbal but is keen to learn signs to communicate to his parents and teachers. 

We got told from professionals when Jacob was just 10 months old and he had infantile spasms "not to expect much from his future" they wouldn't know if he would be able to walk, talk or even smile. We never ever gave up hope... Jacob has achieved so much and is the most incredible little boy. 

Jacob is the most happiest boy I have ever met, he loves ducks, nursery rhymes and water... actually any messy play! He loves school and loves his little sister Millie. 

He has the best face expressions and laugh! His flappy arms and excited legs fill us with joy and his smile fills any room with sunshine! He is our shinning star! Our hero! 

Why we are fundraising

At the moment Jacobs bedroom is upstairs, we have one bathroom in the house and that is also upstairs. 

We have to carry Jacob up and down the stairs on a daily basis to get him to the bath (his favourite place) and his bedroom, Jacob tends to hit, pull hair, kick his legs and it can be extremely dangerous carrying him down the stairs. We try lots of ways to get him up and down the stairs... bum shuffling down and helping him try and climb but Jacob is still very unsafe as he has absolutely no danger awareness and would go head first down the stairs without support, plus he is 3 stone and getting very heavy to carry. 

We need to create an accessible home for Jacob which would mean creating a  downstairs bedroom and wetroom for Jacob so he can have the independence and freedom to get to his bedroom, this would also mean Jacob would be safe and his parents can continue caring for him at home with the dignity he deserves. 

We struggle lifting Jacob in and out of the bath, he absolutely loves bath time! He loves water and splashes like mad! Our floor boards are rotting away as they are so damp with the amount of water he splashes (we fill the bath up with the smallest amount of water as well!!) Having a wetroom would mean Jacob can splash to his hearts content, we can take him to his wetroom easily and safely and we wont hurt our backs lifting him in and out of the tub. 

Our Aim 

Our overall target is £45,000!! We are on £7,500 now! We will receive the DFG from the council to help us with the adaptions but this is only covers a small amount of the works needed. 

I get asked a lot of questions... 'why is it costing so much?' ' Cant you just re-mortgage?' 'You can get OT involved and they will refer you to the council... '

The reasons its costing so much is that we need to extend out and practically move  the whole of our downstairs around, we don't want to just build an extension and put Jacob on the outside of the house, we want him to be in the actual house still and be as near to us as possible. 

We have had OT's referrals and the council are helping as much as they can but as we have a mortgage on our home they are unable to help us with the whole amount. 

We don't know how long this will take, but we won't stop. We will continue to fight, walk, run, sell, dive, cycle, bake... anything we need to do to get Jacob the home he deserves, an accessible home that Jacob is safe and happy in. 

We cannot thank you all enough already for all your help and support so far... we still have a long way to go but with your help- we can get there! 

We are raising money through Sullivan’s Heroes who is a charity offering support and financial assistance for families raising essential funds for vital home adaptations for a disabled child, to continue to care for their child at home, safely and with dignity.