Hello all you wonderful people, I am asking a favour of you all today. I am doing a sponsored 8 mile walk on the 5th September to raise money for home adaptations, it is from my home town of Crawley to a neighbouring town, East Grinstead ending in a pub, because everything needs a silver lining.
I have been following my friends journey via her social media about her wonderful little boy Jacob. Sophie is an incredible and inspirational mum and I really hope we can help raise some awareness and much needed funds to get this family on track. I must admit I don’t know much about what Jacob has so I am going to use Sophie’s own words below. There will be a link at the bottom of this page to the charity Sullivan’s Heroes where you could read more and donate. Please, Please can I ask all of you to donate whatever small amount you have spare and help me, help them!
Sophie’s Words… “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!
Sophie, Ian, Jacob and little Millie.
Sullivan’s Heroes raises essential funds towards vital home adaptations for disabled children, such as 5 year old Jacob – who we start this week by introducing to you!‘Jacob’s Journey for home adaptions’ requires £45,000 to be raised above the Disabled Facilities Grant awarded to Jacob – to create a fully accessible downstairs bedroom, wetroom and ramp access to the front of Jacob’s home to meet his needs.To read more about Jacob’s project and how to support him, please visit: https://www.sullivansheroes.org/projects/jacobs-journey-for-home-adaptions/
Please can you comment below and let me know if you are able to donate so I can try and keep track of what I am able to raise, I will be starting the pot off with £10!