About Nathan:

In 2011, Nathan was born with Edwards Syndrome and Jacobsen Syndrome. This is an incredibly rare combination of 2 genetic disorders that cause multiple medical and developmental issues. The doctors told his parents that he had a heart condition and he would likely not live for more than 2 weeks. However, Nathan defied the doctors and survived due to the lifesaving heart surgery he was given at 1 week old and again at 4 months old. Since then, NayNay (as he is affectionately known by those who know and love him) has overcome more months in hospital and more surgeries this his parents can count. NayNay has shown, every step of the way, that he writes his own story - he is non verbal but uses other ways to communicate, he can’t walk but that doesn’t stop him from getting to where he wants to go. Anyone who meets NayNay cannot help but fall in love with him.

Nathan is a happy, stubborn and loving boy who is adored by his 3 brothers, his parents, a wonderful team of friends and family.

Nathan’s family:

Nathan has one younger and two older brothers. The two older brothers, Harrison and Joey, both work hard at school and help look after their younger brothers when at home. Harrison enjoys playing guitar and is currently at University in Nottingham. Joey is at college and enjoys being very creative with music and art. He is part of a youth group which promotes music in the community. Jesse, the youngest, is only 7 but already understands so much about Nathan’s medical needs and loves making his brother NayNay laugh! Nathan's mum and dad, Sadie and Stuey, both work for South East Coast Ambulance service - Sadie as a Business Support Manager in the head office, and Stu as an Associate Ambulance Practitioner out of Gatwick Make Ready Centre. They both work extremely hard, at work and at home, to serve their community and family.

The project:

The family have been living in their home in Ifield, Crawley for the last 13 years but have never managed to get the adaptations that Nathan needs.

- An extension would provide adequate living space with a hoisting system (also creating room for equipment, storage of personal care products, and their kitchen - which is partly in their shed in the garden)

- Optimised bedroom and bathroom to provide safe sleeping, hoisting and hygiene facilities (Nathan is immuno-compromised and hygiene is important). Nathan’s carers are unable to carry Nathan up the stairs as manual handling as he is too heavy, however there is no legislation to support the family and therefore they have to carry Nathan up and down the stairs. Sadie and Stu are physically unable to lift Nathan in and out of the bath, so they have to travel over an hour away to Nathan’s hospice every time Nathan needs a bath.

Support

The family contacted the founder of Sullivan's Heroes for support and advice. The idea of fundraising was incredibly daunting but thanks to Sullivan’s Heroes, Sadie and Stuey found solid support and guidance and a pledge of help along the way. The love and kindness has been overwhelming!

So far

The family have been working with Amber Living. A company that specialises in building projects for people with disabilities.

After multiple attempts; Planning permission was finally granted on 5th April 2024

Estimated costs in Spring 2024 were £215,000

In the mean time Sadie became unwell in April 2024 and was diagnosed with a heart condition making the physical task of lifting and carrying Nathan more difficult.

In Spring 2025 Stuey sustained a back injury which has meant that they have had to rely on Joey for manual handling.

Next steps:

The Family are eligible for a Disability Finance Grant of £30k and have been pledged £35k from Crawley Borough Council. Therefore the family needs to independently raise £150k independently.

The family will need to find trades people, and materials which are both in very high demand, therefore finding affordable and available resources will be challenging. This means that the longer the family take to fundraise the higher to total costs are expected to be.

Nathan's parents would like to thank those who have pledged towards this project. And, to those who have advised them, lifted them, prayed for them and been there for them so far, your love and kindness has given them the strength to see this through!

Together we can make this house into a Haven.