‘Joshua’s Journey’ raises £3,000 for Newtownabbey boy with rare condition

Joshua Baxter and his mum Lisa. INNT 17-064-GR
Joshua Baxter and his mum Lisa. INNT 17-064-GR

A Newtownabbey mum whose son suffers from a rare facial condition has thanked fundraisers who raised £3,000 for his cause.

Mossgrove Primary School pupil Joshua Baxter, aged nine, was born with Facio Frontonasal Dysplasia.

At the time, the local boy was the only child in Northern Ireland to suffer from the rare condition, which left him with no bones in his nose, only half an eyelid over his right eye and two large gaps in the bones in his forehead.

Mum Lisa recalled: “When Joshua was born at the Royal in October 2005 they didn’t know what was wrong with him or how long he was going to live.

“In February 2006 we were sent to the Chelsea and Westminster Hospital in London, where we were told that Joshua could lead a normal life and go to a normal school but he would need surgery until he was 18 or 19 years old.

“At the time we were told it was the result of “sporadic genes” and it could happen to anyone. There were only one or two children suffering from it in the UK then and none in Northern Ireland, so Joshua is a trailblazer.”

Last July, Joshua underwent his first corrective operation at Great Ormond Street Hospital, during which his heart stopped. Lisa revealed: “They gave him two nostrils and bridged the gap in the bones so his eyes look closer together.

“They will keep working on his nose to shape it and stretch his eyelid across. His right eyelid only comes across half way so we have to put cream in his eyes every night to keep them moist.

“They have also found that his right eye is sitting lower than his left which could mean another operation. Joshua will need four or five operations until he is at least 18 years old.

Joshua’s next operation will take place when he reaches P7 or in his first year at high school. In the meantime, Lisa and Joshua’s grandparents will continue to travel to London two to three times a year for check-ups.

Lisa continued: “We are going back in October when he will have scans done and a sleep study to check his breathing in the night.”

Fitness NI has launched a fund named “Joshua’s Journey” which has raised £3000 to help the family cover travel and expenses in London.

Lisa commented: “We are so grateful to Fitness NI and all those who have fundraised for us, as well as to our friends at Glengormley Methodist Church BB and Greenisland Methodist GB for support.”

Despite his condition, Lisa says Joshua is “a confident wee boy” who enjoys the Boys Brigade and Sunday School. She stated: “He charms everyone he meets with his wit and how he handles himself and I couldn’t be prouder of him.”