LIHU‘E — Association of Surfing Professionals 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
LIHU‘E — Association of Surfing Professionals 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, Australia on the weekend, states a press release from ASP.
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,” Perrow said. “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.
“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 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.”
O‘ahu’s Coco Ho and Australia’s Sally Fitzgibbons chatted with Dow just before Coco went out and won her final. World No. 2 ranked men’s surfer Taj Burrow greeted him after he won his heat and Adrian Buchan hung out with Dow just prior to his quarterfinal. He enjoyed the great surfing and surfers at Merewether all weekend.
Dow, 24, suffers from what is called Leigh’s disease, also known as Subacute Necrotizing Encephalomyelopathy (SNEM). It 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 Dow, the onset of the disease happened suddenly when he 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 months. This was followed with a prognosis that he would likely not live beyond his fifth birthday. By five he was in an electric wheelchair. Up until that time, his parents were completely unaware of the devastating disease, as there had been no problems with Tom’s health or development.
He had developed normally — walking at 12 months and talking by 18 months. 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. Dow requires assistance with most activities of daily living but is cognitively fine and able to organize the world around him.
He can’t talk too much but he understands everything and communicates with the assistance of an alphabet board along with great smiling abilities and thumbs up!
His sister Laura died of the disease at the age of 6 after the onset of the disease at age 2.
Dow 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 functions with other DSA groups at Collaroy in Sydney.
He surfs with a group of friends at Nobby’s Beach in Newcastle bi-monthly in the summer months. He uses a soft longboard.
The YouTube video that features Dow is titled “Tom’s surf extended”.
Story provided by they Association of Surfing Professionals
Bells Beach to host Rip Curl Pro in April
The Rip Curl Pro Bells Beach presented by Ford, the second stop on the 2011 ASP World Title season, will welcome the world’s best surfers this April for its incredible 50-year anniversary, states an ASP release.
Running from April 19-30, the event will feature both the ASP Top 34 in the Rip Curl Pro Bells Beach, as well as the ASP Top 17 in the Rip Curl Women’s Pro Bells Beach.
The monumental event will be attended by not only the world’s best surfers but by industry moguls paying homage to such an historic accomplishment.
“Bells Beach not only holds a special place in the hearts of Australians but well within the global surfing community as a whole,” Brodie Carr, ASP International CEO, said. “The aura surrounding the venue borders on the spiritual and the event never fails to deliver memorable experiences. Congratulations are in order to both Rip Curl, Surfing Victoria and the Bells Beach community on celebrating their 50th year in operations this season. I wouldn’t miss it for the world.”
Kelly Slater, 39, reigning 10-time ASP World Champion, has claimed four prestigious Bells titles (’94, ’06, ’08, ’10) and with a win at the opening event of the season on the Gold Coast, will have his sights on defending his title at the Rip Curl Pro Bells Beach in 2011.
“The Bells trophy is probably one of — if not the — most sought after trophies in professional surfing,” Slater said. “Anyone who has ever gotten a Bell has talked proudly of it. It’s like winning a World Title trophy.”
Australia’s Mick Fanning, 29, former two-time ASP World Champion (’07, ’09), posted his first elite tour victory as a wildcard at the Rip Curl Pro Bells Beach in 2001.
“Fifty years at Bells is huge,” Fanning said. “It has so much history, from the first days with MP to MR to up until now. So many great surfers have won the Rip Curl Pro because it’s one of the hardest ones to win.”
Running in conjunction with the men’s event will be the Rip Curl Women’s Pro Bells Beach presented by Ford Fiesta, the second stop on the 2011 ASP Women’s World Title season.
Australia’s Stephanie Gilmore, 23, reigning four-time ASP Women’s World Champion, boasts three Bells titles (’07, ’08, ’10) and appreciates the history that comes with competing at the famed righthand pointbreak each season.
“To have an event there for 50 years is good for surfing and good for the younger generation to be able to go there and compete and be able to experience the aura that’s been there since the very beginning,” Gilmore said.
