This is our son Jacob. He is 5 years old and he is our hero! 

Jacob was born with a very rare genetic disorder called NEXMIF/ KIA2022. It's so rare that there are less then 100 cases that we know of worldwide so there is lack of research and information. This condition causes Jacob to have a severe global developmental delay ( his mental age is approximately 12 month old maybe younger) Jacob has learning disabilities and epilepsy as well as being non verbal but is keen to learn some signs to communicate to his family and teachers. Jacob has sensory processing disorder and behavioural issues, he also has other complex health needs with his hormones and pituitary gland and takes regular medication daily. Jacob cannot walk far without support, and he cannot climb up and down stairs. 

Jacob lives at home with us and his little sister Millie. We carry (almost 3 stone) of Jacob 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.

We need our home to be adapted to meet Jacobs needs, as he gets older and heavier we want to continue caring for him but are so worried  we will no longer be able to carry him up and down the stairs and we 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 us. 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!

Jacob is the happiest little 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 5 years of life. He is an absolute hero!!

So to raise VERY vital and much needed funds Sophie and I will be walking a massive 32 miles from Great Ormond Street hospital in London back to our home in Crawley! Jacob has been a regular visitor to Great Ormond Street hospital so we thought it was fitting to take on the challenge to do this walk. 

This is a huge challenge for us and will have very swollen blistered feet and cramped legs at the end of the day but it will be worth it to raise as much as we can for our amazing little boy! 

Please donate what you can and help us help our boy 

Thank you 

Jacobs Mummy and Daddy xxx