A FUNDRAISER has been organised by the family of a North Belfast child in aid of a specialist ward in the Royal Belfast Hospital for Sick Children.
Five-year-old Jonathan Doran has spent the past sixteen months in the Paul Ward at the hospital.
Jonathan was diagnosed with a rare condition called Geleophysic Dysplasia, which effects his skeletal form, heart, lungs, skin, liver and eyesight. Jonathan has now been on a ventilator 24/7 since December 2021.
Jonathan’s mother Nina said the aim of the fundraiser is to help and support families in the ward, particularly with buying everyday items to help with the cost of staying at the hospital, which can be long-term in many cases.
“There are so many people staying on the ward and because it is a neuro ward people do tend to be here more long term," Nina said.
“We want to get anything that we can that will really help the long-termers.”
Nina, who is from the Cliftonville area said that the Paul Ward has been Jonathan’s home for the last 16 months.
“At ten-months-old, Jonathan was having infection after infection and ended up in intensive care for three weeks,” she said.
“We were just stumped as to why he was prone to so many infections. He has got very short upper arms and legs. By chance, I came across a group on Facebook. I saw all these kids with the same condition. They all looked like brothers and sisters. It was the eyelashes that gave away a certain condition.
“I brought it to the attention of his consultant and then we got it verified and it was in fact that condition. On one hand it was good to have answers, on the other it was devastating to have it confirmed that it was that type of condition and what his life would involve for the short time it will be.”
In October 2022, the family were told Jonathan had only months left to live.
“In January he had a really bad spell but he made a massive turn around. By the grace of God we have been given extra time with him, it’s a miracle.
“The community have been amazing. I have never seen such an amount of support as I have until everyone came together to help out. They’ve all been absolutely amazing, especially Lorrie Murphy Boyce, Teresa Maguire and Michelle Ní Ghríofa.
The online fundraiser will take place on Saturday with a range of donations to ballot on including a one hour reflexology, Indian head massage, a range of vouchers for beauty, food, consoles, and hair, alcohol and a range of hampers including toys, sweets and chocolates. All items have been donated by a range of businesses and members of the community.
Ballots can be purchased by contacting Lorrie Murphy Boyce, Gerard Murphy Boyce or Michelle Ní Ghriofa. The cost of a strip is £1. Paypal details to donate or buy a strip: Lorraineboyce123@outlook.com
