Burrow, Ho, Buchan and Fitzgibbons Catch Up with Local Surfer Thomas Dow During the Burton Toyota Surfest
NEWCASTLE/Australia (Monday, March 21, 2011) - Association of Surfing Professionals (ASP) surfers Taj Burrow, Adrian Buchan, Coco Ho and Sally Fitzgibbons joined with Burton Toyota Surfest organizer Warren Smith to ensure local surfer Tom Dow, who suffers from Leigh’s disease, had a good experience and view of the finals at the Burton Toyota Surfest in Newcastle on the weekend.
ASP surfers representative Kieren Perrow assisted by alerting fellow ASP surfers at the event about the opportunity to catch up with Tom.
“When I first saw Tom it was via his youtube surfing link and I was nothing short of amazed and inspired by his courage and determination to live his life to the fullest – To see his passion for surfing was awesome and I really wanted to give him the chance to experience professional surfing and to be part of our life for a moment,” said Perrow.
“With the help of Warren Smith and the organisers of Surfest, Tom was able to come and watch the contest, and a few of the surfers (Ace, Bottle, Taj, Coco & Sally) really went out of their way to make sure he had a great time.
“He was so stoked to be able to meet them and be part of the contest -It feels great to be able to have given him this opportunity so thanks to everyone who made it possible.”
The photos linked above captured Coco Ho (Hawaii/event winner) and Sally Fitzgibbons (ASP world number 2 ranked surfer/Australia) chatting with Tom just before Coco went out and won her final, Taj Burrow (ASP world number 2 ranked surfer) greeting Tom after he won his heat and Adrian Buchan with Tom just prior to his quarter final.
It was a thumbs up from Tom who enjoyed the great surfing and surfers at Merewether all weekend -
ABOUT TOM – 24 year old Thomas Dow’s condition -
Illness: Leigh’s disease, also known as Subacute Necrotizing Encephalomyelopathy (SNEM) is a rare neurometabolic disorder that affects the central nervous system.
There is no definitive diagnostic test for Leigh’s disease. Some forms are inherited and usually affect infants between the age of three months and two years, but, in rare cases, teenagers and adults as well.
In the case of the disease, mutations in mitochondrial DNA or in nuclear DNA, causes degradation of motor skills and eventually death.
There is currently no treatment for this disease.
With Tom, the onset of the disease happened suddenly when Tom was four and a half beginning with him walking with an odd gait.
Given that the condition is so rare and that there was no family history, a tentative diagnosis of Leigh’s disease took many tests and several month. This was followed with a prognosis that he would likely not live beyond his 5th birthday.
By five he was in an electric wheelchair. Up until that time Tom’s parents were completely unaware of the devastating disease as there were no problems with Tom’s health or development. He developed normally walking at 12 months and talking by 18mths. The disease progressed rapidly at first and within 12 months he lost the ability to talk fluently and walk unaided. Since that time the progress of the disease has been chronic but with periods of acute illness and loss of function. Tom requires assistance with most activities of daily living but is cognitively fine and able to organise the world around him.
He can’t talk too much but he understands everything and communicates with the assistance of an alphbet board along with great smiling abilities and thumbs up!
Tom’s sister Laura died of the disease at the age of 6 after the onset of the disease at age 2.
Tom is a member of the Disabled Surfing Association located at Belmont south of Newcastle. He goes surfing with this group monthly. He also attends annual surf with other DSA groups at Collaroy in Sydney.
He also goes surfing with a group of friends at Nobby’s Beach Newcastle bi monthly in the summer months. He uses a soft long board. We think it is with this group that a You Tube video was produced – You Tube – ‘Tom’s surf extended.’