Help get Jack’s dreams on track
A family battling the same rare genetic disease are campaigning to raise more awareness of their condition which has no known cure.
Linzie Offord, 35, from Darvel, was diagnosed with Von Hippel-Lindau syndrome (VHL) ten years ago, and unknowingly has passed it along to her three children.
VHL, which causes tumours to grow continuously on multiple organs, is rare with only one in 36,000 people being diagnosed.
People with the condition are also at an increased risk of developing a type of kidney cancer and a type of pancreatic cancer.
The mum-of-three has undergone eye, kidney and brain surgery since her diagnosis in 2007.
Linzie’s sister-in-law and best friend Michelle Thomson brought the issue to the Post’s attention, following many fundraising attempts by the family.
Michelle, from Ayr, said: “It all started 10 years ago when my sister-in-law was diagnosed. No-one knew what it was as the disease is so rare.
“My nephew Jack was diagnosed when he was five, my niece Cerys was three and my other nephew Arran was just seven-weeks-old.
And with the average age of diagnosis for VHL being 32-years-old, all four of the Offords were unusual cases.
Michelle, mum-of-three with another daughter on the way, added: “Through the years my husband’s family have tried to raise awareness and make the disease more heard of as it’s so rare.
“There is no cure for VHL - all that can be done is get checked and scanned regularly.
“We have all heard of cancer research, breast cancer care and others but not VHL.”
Michelle’s nephew Jack, now 15, lost his sight in his left eye and could possibly lose all sight in his right eye.
The family are now campaigning, not only for more awareness of the condition, but to raise money for Jack’s dream holiday in Dubai.
Last year, the family managed to raise £4000 for their campaign #jack2dubai in a short space of four months.
And have raised a further £364.50 at their most recent race night on Friday, June 1.
Jack is jetting off to his dream destination in September with Gran ‘Doo’ Sandra by his side.
“The goal is to make it as memorable as we possibly can,” said Michelle.
“We had originally looked at sending the whole family but it’s not feasible.
“He loves the supercars so he’s very excited.”
Since the race night, 12-year-old Cerys has been taken to hospital awaiting MRI scans for tumours.
Michelle added: “The battle we face is no-one knows about this horrible rare disease and we are fighting every day to raise awareness.”
To help Jack get his dreams on track, visit www. gofundme.com/jacksdream-trip to donate.
The battle we face is no-one knows about this horrible rare disease and we are fighting every day to raise awareness Michelle Thomson