A LARNE mother is on a mission to raise much-needed funding and awareness after her son was diagnosed with a rare genetic disorder.
Eighteen-year-old Lee Barry suffers from von Hippel-Lindau (VHL) syndrome, an inherited condition which can cause tumours to form in different parts of the body. The growths are made of newly-formed blood vessels and, although they are often non-cancerous, they can cause serious or life-threatening complications.
Tragically, Lee’s father and grandfather both lost their lives to VHL, and his mother Alison is determined to raise as much money as possible towards research into finding a cure.
She told the Times: “Lee was diagnosed with VHL in June last year, which came as a real shock to us initially. Three tumours were discovered in his right eye. Thankfully they were all benign, and two of them have since been removed.
“As far as I am aware, Lee is only the ninth person in Northern Ireland to be diagnosed with VHL.
“He is 100 per cent healthy, but every time he has to go for a scan I am afraid of what they will find, and even when he tells me he has a headache I get worried. His father died from VHL in 2011 at the age of 43, which makes it even more difficult. But Lee is very mature for his age and we are just trying to get on with life as best we can.”
Alison paid tribute to everyone who has supported her fundraising efforts, which have seen her raise a whopping total of more than £3,000 to date.
Lee, a former pupil at St Killians College who currently attends Belfast Met Football Academy, is also very much involved in the fundraising events.
Alison added: “Lee is really into his DJing, and at our most recent fundraiser in the Kiln last month, he joined three other DJs to provide the entertainment.
“We had so much support from local businesses who donated prizes for the raffle, and we raised about £1,350.
“I want to say a big thank you to everyone who has helped and supported us at each of our fundraisers. VHL is not a widely-known condition and many people have never even heard of it, so I hope our events will help to increase the level of awareness in Northern Ireland,” Alison concluded.
This October, Alison and Lee plan to travel to Budapest to take part in a VHL seminar and meet other leaders of VHL groups from across Europe.
She also keeps in close contact with VHL groups in the United States, keeping them updated on her fundraising efforts and learning about current research into the condition.
Alison is also hoping to organise another fundraiser later this month in the Kiln; an all-day pool competition. Further details of this event will appear in the Larne Times when they have been finalised.
Alison Barry with her son Lee, who has Von Hippel–Lindau (VHL) disorder. They have organised various fundraising events for the cancer charity, including an all-day pool competition to be held in the St Comgall’s Club on March 30.