Jacob was born with a rare de novo gene mutation, a condition called NEXMIF/KIA2022. It's so rare there are under 100 children that have been diagnosed worldwide. There is not enough research carried out on this condition so it is unclear on what Jacobs future will be like. 

This condition causes Jacob to have severe global developmental delay and learning disabilities. Jacob also has epilepsy and sensory issues. 

When Jacob was born we found out that he had a problem with his pituitary gland and hormone levels, he also suffers with gastro-oesophagus reflux disorder. 

As a baby Jacob wasn't hitting milestones, he wasn't interested in toys or interacting with people or other children. He wasn't able to hold his head up or roll over. At around 4 months old Jacob started having seizures called Infantile spasms/ west syndrome which were misdiagnosed until he was about 8 months old. At this point Jacob wasn't able to smile or giggle, he was sleeping most of the day as his little body was recovering from the serious amount of cluster spasms he was having throughout the day and night. Jacob was put on an intensive course of treatment and thankfully we managed to control them. 

We had a meeting with Jacobs doctors, neurologists and specialists who advised us 'not to expect much' from Jacobs future. It was that day I made it my goal that he would prove them all wrong... and that's exactly what he did!! 

Fast forward to now and Jacob is an incredible little 5 year old who has literally blown us away with his amazing determination! After endless physiotherapy, hydro therapy, conductive education... Jacob took his first steps! He was 3 and a half years old and he started walking without support. Now at 5 years old he is extremely unsteady and cannot walk far but its something we thought he would never be able to do. Jacob cannot go up and down stairs, and still requires a lot of care and support. 

Jacob is non verbal but lately has shown huge interest in signing and is learning more and more every day, Jacob has no danger awareness or understanding of the world around him. 

Jacob is the most amazing little boy you will meet, he loves everybody and everything... water grass and nursery rhymes especially! There is never a dull moment with him- he is 100 mph from the second he wakes up until the moment he falls asleep. His loud flappy and excited ways makes everyone fall in love with him, his got the most infectious giggle and his gorgeous smile fills any room with sunshine 

Jacob needs a more accessible home where he can move around safely and easily so we can continue caring for him at home when he gets older and heavier. 

We need to create a downstairs bedroom and wetroom for Jacob also a ramp access to the front of the house and level access to the garden. Jacob has received a disabled facilities grant from the local council however this will only cover a small proportion of the cost of the works so we have a big funding gap to fill 

Sullivan’s Heroes 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. we are very grateful that the charity is helping Jacob to get his home adaptions. 

Please help Jacob on his journey to provide our amazing superhero with a safe and accessible home 

#Jacobsjourney