The father and friends of a boy from Truro who has a rare and life-limiting brain disease are doing a parachute jump to raise funds for further research into the illness.
10-year-old Toby Penrose was diagnosed with Adrenoleukodystrophy, or ALD, an extremely rare genetic illness that affects approximately one in 20,000 males. It was highlighted in the film “Lorenzo’s Oil”.
The most devastating form of ALD appears in childhood, generally between the ages of four and ten years old. It causes a relentless progressive deterioration to a vegetative state or death, usually within 5 years.
“It is a genetic condition and Toby was diagnosed after we took him to the Royal Cornwall Hospital in January this year, and we were referred to Bristol Children’s Hospital where tests confirmed that Toby had the disease,” says Toby’s mum Emily. “Because it is a genetic condition, Toby’s older brother was also tested and this revealed he had developed the condition around the age of five, but the progress of the disease stopped spontaneously. That was a huge relief of course, but the doctors know so little about ALD that they were unable to tell us if the condition might recur in Toby’s older brother, or whether Toby’s condition might stop developing in the same way. We decided the only way to get through this was to try to be as positive as possible, and so this is why Graham and our close friends Martin Miller and Susanne O’Brien decided to do a parachute jump to raise money for ALDlife (www.aldlife.org)
“This charity supports patients and their families, helps to fund medical research and campaigns to raise awareness so that children with ALD can be identified as early as possible, while there is the best hope of a beneficial treatment.”
Toby’s dad Graham along with family friends Martin Miller and Susanne O’Brien are performing the parachute jump from an aeroplane on September 6, 2015 at Perranporth airfield.
To donate to support the parachute jump for Toby visit the fundraising page at www.justgiving.com/jumpforALDlife
