Jika Jika ‘fundraver’ for seven-month-old Reid
Jika Jika, the organisers of dance music festivals in the city, are to host a live stream this weekend to raise funds for a baby who has lived in hospital since he was born.
Reid McGlinchey Stewart was born prematurely at 32 weeks and has spent the last seven months in hospitals in Derry and Belfast.
He was diagnosed with a genetic condition, Noonan Syndrome, earlier this year after medics noticed that he was not behaving like a typical baby and had some distinctive features.
Noonan Syndrome is a genetic condition that affects between one in 1,000 and one in 2,500 children.
Common symptoms include certain facial features, such as a broad forehead, drooping eyelids and a wider-than-usual distance between the eyes, restricted growth and heart defects.
Mum Eireann said that while she was aware her baby had a heart issue before he was born, the genetic condition was not evident on pre-natal scans.
“Reid was born in November last year at 32 weeks and was admitted to the neo-natal unit in Altnagelvin. On Christmas Eve, his heart started to play up and he got progressively worse.”
Reid has hypertrophic cardiomyopathy, restricted myopathy and an elongated valve in his heart.
His mother said: “In January, a genetics doctor came to look at Reid because he wasn’t behaving like a typical baby, even for one that was born at 32 weeks, and there were certain features present.
He tested Reid for one particular genetic condition - Noonan’s - and we had to wait five months for the results.
“There are 16 different Noonan’s gene types and there are a spectrum of symptoms. There are people out there who have it and don’t know they have it because it is very mild. We have been tested, but none of us have it. They think Reid’s is as a result of a spontaneous mutation.”
The baby took a turn for the worse in March and ended up in the paediatric intensive care unit of the Royal Belfast Hospital for Sick Children.
Reid was put on a ventilator and remained in ICU for eleven weeks.
While the family waited for the results of the genetic tests, Eireann joined a support group on social media and learned about an experimental drug that could help her baby.
“It is a cancer drug that can be used on babies with certain types of Noonan’s. It is a real Hail Mary drug and it was his last chance, as medics had tried everything else.”
Reid’s doctors agreed to start him on the experimental treatment and he has come on leaps and bounds.
“He got off the ventilator three weeks ago and now he doesn’t need any oxygen at all. The cardiomyopathy is also starting to reverse and the doctors are just amazed by him.”
The last seven months have been particularly hard on the family, with Eireann and dad Sean taking it in turns to stay in hospital with Reid and at home with their other son, three-year-old Miller.
“It was only last week that our parents got to meet Reid, because of all the Covid restrictions. He is likely to be in hospital for at least another month and when he does come home we will have to bubble ourselves and take a few months off work because he is so susceptible to infection.
“Everyone else will be coming out of lockdown and we will be going into it!”
Jika Jika have launched a ‘fundraver’ for the family to help with the financial costs of having a child in hospital and Eireann said they were very grateful. “It means so much, we really won’t forget it.”
A live stream of the event will take place on the Jika Jika Facebook page on Saturday, June 12 from 6pm. To donate visit https://www.justgiving.com/crowdfunding/babyreid