Blind World


Middle onset macular degeneration.
Teen regains sight; can see again after treatment for rare illness.





December 27, 2003.

By Veronique Mandal,
Windsor Star.




Gaye Robinson tries not to use the word "miracle," but when she looks across the room at her daughter reading a book, that's what she sees. Kayla Robinson, 15, a talented baseball pitcher, was diagnosed with a congenital disease similar to the wet form of macular degeneration.


She is only the second teenager in Canada to develop a disease which normally afflicts people over 50, her parents were told. But thanks to an expensive and sometimes risky therapy -- in which the chance of success was less than 20 per cent -- Kayla's sight was restored.


"We still can't believe that she went from being declared legally blind to having almost perfect vision," Robinson said. "It's hard not to think of it as a miracle."


Kayla's problems likely began in 2001 when she began complaining that her vision was blurred and she was having difficulty seeing the blackboard, Robinson said.


Unusual spot


Road signs were also more difficult to read, so Robinson took Kayla to a local eye doctor who noticed "a spot at the back of her cornea." She was given glasses with a "small prescription" which she wasn't required to wear all the time. Because of concerns about the unusual spot, the doctor referred her to a specialist who recommended a series of tests and, on her 13th birthday, she underwent an MRI, a spinal tap and CT scan.


"All the tests came back fine and the doctor said not to worry," Robinson said. "Looking back that was probably the beginning of macular degeneration."


In July 2002, her vision became fuzzy and Kayla underwent a spinal tap to rule out a brain tumour. The test was negative and she started Grade 9 at St. Thomas of Villanova high school.


"I thought 'OK, this is getting worse' and I couldn't see the board," Kayla said. "It was like looking through water. I thought I just needed a better prescription."


By April, Kayla was suffering headaches and became legally blind.


Legally blind means that when wearing glasses, at best, all a patient can see is the 20/200 line on the eye chart from a distance of 20 feet with the patient's better eye.


The Robinsons took their daughter to see Windsor specialist Dr. Fouad Tayfour, who booked an emergency appointment with Dr. Murari Patodia in Sarnia.


"It's a miracle I got my vision back in six weeks. I'm not afraid and I'm not living in fear. I don't want to go blind but I could learn to live with one eye. I'm a lucky girl."


"We had the appointment within two days, so we knew it was serious. I felt bad because of what happened a year earlier and felt guilty that we should have taken her back earlier," Robinson said.


"Dr. Tayfour made me feel better when he told us it wouldn't have made any difference and what was happening to her was beginning to happen very quickly."


Tayfour said Kayla's was the first such case he has seen


On the visit to Tayfour, Kayla's vision was 20/300 in her left eye and 20/50 in her right eye. Less than a week later Patodia recorded her vision at 20/400 and 20/50. Normal vision is 20/20.


Blood vessels behind her left eye were swollen and bleeding, which causes scarring and results in the black spots at the back of the eye. While her right eye had "the look" of macular degeneration, it wasn't bleeding.


Robinson said they were "blown away" by the diagnosis and listened in shock as Patodia described the possible treatments.


The first option was a cold laser to the outside of her eyes, which Patodia said might stop the disease from progressing but would not improve her vision.


The second was to undergo photo-dynamic therapy, which consists of injecting a relatively new drug, Visudyne, into Kayla's arm. The drug would go to the new blood vessels and hopefully stop any further bleeding. That would be followed by laser treatment to trigger a chemical reaction that kills fragile new cells which cause the bleeding.


Mike Robinson said the odds they were then given were as startling as the diagnosis.


"We were told the Visudyne treatments only offered a 10- to 13-per-cent chance of improving her vision and a 59- to 70-per-cent chance it would stop the disease from progressing," said Mike.


"The cost of the treatments were $2,800 and she would need six to 10 of them. Dr. Patodia told us to take a couple of hours to think about it and to discuss it."


Robinson said she cried all through lunch and it took her daughter's courageous words to make them make a decision.


"Mom I don't care if my eyes don't get any better, I just don't want them to get any worse," Kayla said, her words prompting her parents to decide to give her that 10 per cent chance to improve her vision.


"We didn't have the money, but we knew we could get the financing, so we opted to go through with the treatments," said Robinson, a finance adviser for TD Canada Trust. Mike is an auditor with the GM transmission plant in Windsor.


The treatment wasn't without risks and the Robinsons had to sign a waiver because side effects could be cancer and sterility.


Kayla received her first treatment that same day. She had to remain in the office for 15 minutes following the injection and had to wear sunglasses and be covered from head to foot once she was outside.


"The drug makes you photosensitive and you can get third-degree burns even on a cloudy day," said Kayla. "Then I had to stay inside for two days."


Mom turned to prayer


She returned to school and her mother went to church to ask for help for her daughter.


Those prayers were answered six weeks later when they took her back to Patodia in sarnia. Her vision was 20/50 in her left eye and 20/30 in her right eye. An angiogram showed the bleeding had stopped.


Patodia decided not to do a second treatment. On her last visit her left eye was recorded as 20/20 and the right 20/30+.


Sitting on the couch in her parents' living room, with her legs curled under her, Kayla smiles shyly, her hazel eyes twinkling in amusement at being the centre of attention.


Not that she's any stranger to the limelight.


Kayla has twice pitched in the World Series for Little League Canada. With her twin Krista, they helped the LaSalle Turtle Club take home the Canadian championship in 2002.


As her central vision deteriorated, she relied more on her peripheral vision. Her batting was affected and catching was more difficult but she was surprisingly able to pitch a championship game.


"She was thrown off by the eye problem but unbeknownst to me she was compensating by closing one eye," said Mike. "She's an amazing young girl."


In January she will pitch for the Windsor Lady Expos, managed by her mother and coached by her father. One day she hopes to earn a scholarship and pitch for a university.


"I love to be on the mound and I'm pretty strong for a girl," she said. The only dark cloud on the horizon is knowing her disease could hit again.


"It's a miracle I got my vision back in six weeks. I'm not afraid and I'm not living in fear. I don't want to go blind but I could learn to live with one eye. I'm a lucky girl."


After fighting a battle to save their daughter's sight, the family wants Ontario's Health Insurance Plan to pay the bill.


OHIP paid $2,100 for the drug used in her treatment, but refuses to pay the cost of angiograms and specialists fees.


The Robinsons paid the amount -- less than $1,000 -- from their own pockets and said their fight now is for other families.


"This is not for us. We don't know what the future holds for Kayla, but we have to do this so that other parents won't have to fight. It's too important," said Mike. "What happened to Kayla is incredible."


According to the Robinsons OHIP told them the treatment is considered experimental and would only cover the drug cost.


PLAY IT SAFE


Middle onset macular degeneration, or dystrophy, can affect young people between ages five and 20.


It can appear when few or no family members have been affected.


Risk factors for macular degeneration can be reduced. Here are some suggestions:


Stop smoking (only proven risk factor)


Control high blood pressure and cholesterol.


Eat dark green leafy vegetables such as spinach.


Take vitamin supplements.


Protect eyes from excess sunlight.


Use an Amsler grid to check vision.


Have eye exams every six months.






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