A Horam mum is appealing for support so her seriously ill baby son can live with his loving family at home.
Naomi and Duncan Sullivan’s baby Rhys was born five weeks prematurely in April last year.
To begin with Rhys seemed a healthy baby but things were set to change.
Firstly, Naomi contracted a life-threatening blood clot in her leg which rendered her sofa-bound. While her mother looked after two-year-old sister Immi, Naomi was cuddling Rhys and suddenly noticed he had turned blue, was limp and lifeless. He had stopped breathing so was blue-lighted to the Conquest Hospital, Hastings, where it was feared he might not survive the night.
Survive he did and was transferred to the Evelina Hospital, London, where he was diagnosed with a rare virus. Then the family braced themselves to face even more health dramas as tiny Rhys was found to have a huge range of problems including a constricted windpipe and damaged artery. He was also reluctant to feed. While at the Evelina Hospital his heart stopped twice. In August last year he was fitted with a tracheostomy connected to a life support ventilator.
Naomi said: “People look at Rhys and his machines and the fact that now he needs 24/7 care and comment ‘poor you’ but we are so lucky and look past this, he is alive.”
Further tests revealed Rhys has tracheobronchial malacia where his airways are floppy and cannot stay open by themselves. He also has a poor immune system.
Rhys was moved to the Royal Alexandra in Brighton in September where he must wait until he is healthy enough and the family have provisions in place to help with his care.
Naomi went on: “All we want is Rhys home so we can live as a family again. We have been under huge pressure - not just emotionally with Duncan having to work overseas not knowing what he would be returning home to next - but also financially, travelling to London daily and now Brighton. We also have two-year-old Imogen and we want to keep life as normal as possible for her. Rhys has to have a feeding tube set directly into his stomach and we desperately want to remove him from the potential of a hospital infection which could prove fatal.
“We are asking for people to help us raise funds in any way they can to help us pay for much-needed equipment that Rhys will need over the years and the shortfall in the caring budget so both children’s safety can be upheld.”
They have set up a GoFundMe account which makes fundraising easy. To find out more visit: www.gofundme.com/Rhys-039-sjourney