A Haven for 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 Drs told his parents that as he had a heart condition he would not live for more than 2 weeks, however Nathan was given life saving heart surgery at 1 week old and defied Drs by surviving! Nathan has overcome too many surgeries for his parents to count and months in hospital and has shown every step of the way that he writes his own story. Nathan is a happy, stubborn and loving boy who is doted on by his 3 brothers, his parents and team of friends and family.
Nathan has one younger and two older brothers. The older 2 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 studying for his A-Levels and hopes to go to university in September. Joey enjoys volunteering at a church youth group in his spare time is also very creative with music and art. Nathan's mum and dad both work really hard for the Ambulance service.
Before Nathan was born his parents were council tenants and at a year old the family were moved from their small flat and into a house. As Nathan grew so did his needs and it became apparent that the house was unsuitable for Nathan. The council spent years making minor adjustments but would not invest in any big project.
In January 2019 the council stated that they would not do any further works to the house and the family would have to move. The council started their search for a house that would meet Nathan and his families needs but the council and family discovered that no such house existed. The family were left on the housing list for 2 years before receiving a letter in January 2021 that stated as a house had not been found they were being removed from the housing list and being left in the home the Occupational Therapist, social worker and the council themselves had deemed as detrimental to Nathan's health.
They couldn't understand as they could see that home they are in, with a few big but simple adjustments would more than meet the families needs. They just needed:
- An extension to provide adequate living space with a hoisting system and room for equipment and storage of personal care products
- Optimised bedroom and bathroom to provide safe sleeping, hoisting and hygiene facilities.
Nathan's parents had no choice, they had to do anything they could to give Nathan and his brothers the best life they can provide. They put in every overtime shift and saved every penny and eventually in May 2021 they were able to buy the 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. They put feelers out and spoke with Sullivan's Heroes and found a lot of useful advice. They got in touch with Amber - Living Independently and the ball started rolling.
Nathan's parents would like to thank those who have pledged towards this project and those who have supported them so far.
Together we can make this house into a Haven.
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 Drs told his parents that as he had a heart condition he would not live for more than 2 weeks, however Nathan was given life saving heart surgery at 1 week old and again at 4 months old and defied Drs by surviving! Since then NayNay (as he is affectionately known by those who know and love him) has overcome more surgeries this his parents can count and months in hospital. 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 needs to go. Anyone who meets him just cannot help falling in love with him.
Nathan is a happy, stubborn and loving boy who is doted on by his 3 brothers, his parents and team of friends and family.