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 a Trainee 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:

Nathan parents were tenants of the local council. They lived in a small first floor flat with their 2 boys. After Nathan was born the family were moved from their flat and into a house. As Nathan grew so did his needs. It quickly became apparent that the house was unsuitable for Nathan. Instead of moving the family again the council spent years making minor adjustments but refused to commit to any major project.

In January 2019 the council stated that since they would not do any further works to the house, the family would have to move. The council began a search for the house that would meet the needs of Nathan and his family but found that such a house didn’t exist. The family were left waiting on the housing list for 2 years before, without warning, receiving a letter in January 2021 that stated that they were being removed from the housing list. The council has given up! Leaving the family in the house that was deemed detrimental to Nathan’s health by the Occupational Therapist, Social Worker and the Council themselves.

Sadie and Stuey couldn’t understand this, they could see the potential in the home they are in. With a few BIG but SIMPLE adjustments, they would have a home that not only met Nathan’s needs but it would allow him to thrive!

An extension to 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 currently shares the one toilet/bathroom with 5 other people).

Nathan's parents were left with no choice, they did everything they could to give Nathan and his brothers the best life they could provide, putting in overtime shifts and saving every penny until eventually, in May 2021, they bought their house from the council!

The seed had been planted, and the ideas were growing but Nathan's parents had no idea how to turn it into a reality or how much it would cost. Sadie is lucky enough to know the founder of Sullivan's Heroes and contacted them for 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

Currently awaiting an estimate of all costs.

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. This just reinforces how important it is that these works are done urgently.

Next steps:

The family will need to reapply for the Disability Finance Grant as the previous one has now expired.

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.

The family will need to raise the remaining funds.

The family will need to find alternative accommodation which is predicted to cost thousands

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.