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A battle against the loss of sight

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No parent wants to receive bad news when it comes to their child’s health but that’s exactly what former Valley residents Kelly and Tricia Leason heard.
The Leason’s moved to the Swan River Valley in January 1995, where they started a family and made many friends who still hold a special place in their hearts.
“It was quite a hard decision when we decided to move to Martensville, Sask. in 2009,” said Tricia Leason. “Especially when our daughters, Taryn and Kennedi, were settled in with friends, schools and routines.”
Just recently they were given some news that has devastated their family.
“I will never forget Tuesday (June 13) when I received a phone call from my 19-year-old Taryn,” said Leason. “She had gone for a routine optometrist appointment that day and was so excited to buy a pair of glasses. She noticed her eyes were bothering her for some time, but she thought that a prescription pair of glasses would be the solution.
“However, that afternoon, our hearts were broken. My husband, Kelly, and I were called into our family’s optometrist office after hours that evening.
“He explained to our family that the cells behind Taryn’s retinas, in both eyes, are dying off at a rapid rate,” she continued. “Unfortunately, these cells do not regenerate. He informed us that of the 14,000 patients he has seen in his career, he has never seen a case like this.”
Two years prior, in June of 2015, Taryn’s vision was 20/20 in both eyes. Today, her left eye is 20/50 and her right eye is 20/80.
“This means that what most people see at 80 feet, Taryn can see at 20,” said Leason. “The driving standard is 20/50.
“He told us Taryn will lose her central vision in both eyes, that her life will change dramatically, and she should seek counselling. He had made an urgent request for Taryn to see a retina specialist in Saskatoon the following day.”
After many eye tests, the specialist has diagnosed Taryn with Stargardt disease, a form of inherited juvenile macular degeneration that affects one in every 8-10,000 people.
“As a retina specialist, he sees one case a year,” said Leason. “The progressive vision loss associated with Stargardt disease is caused by the death of photoreceptor cells in the central portion of the retina, called the macula.
“He explained that Kelly and I both likely carry a recessive mutated gene, even though neither of us has Stargardt. He also mentioned that 13-year-old Kennedi has a 25 percent chance of also having the disease.”
This news prompted the couple to also have their younger daughter tested.
“The following week, on June 21, we were given Kennedi’s diagnosis,” said Leason. “We felt our hearts were even more broken.
“Kennedi is not showing any signs of vision loss, but he is 95 percent certain Kennedi also has Stargardt disease, as her retina scans were consistent with Taryn’s but in the very early stage.
“The girls have both been to Royal University Hospital to start the genetic testing process,” she continued. “Kelly and I will be going in at a later date.”
Currently there is no known cure or treatment in Canada for the disease, leaving both girls 20/200 vision or worse as the cells continue to die. Even worse, they could also begin to lose some of their peripheral (side) vision as they get older.
“For those of you who know Taryn, she is one of the gentlest, caring, hard-working individuals who has so much determination,” said Leason. “She is currently enrolled in her second year of university at the Edwards School of Business at the University of Saskatchewan, where she will major in Human Resource Management.
“Taryn just returned home from Iceland on July 30, where she was studying abroad for four weeks taking a Leadership and Sustainability course. The evening she returned home, she went for a drive in her car. Unfortunately, Taryn made the decision that evening that she will no longer be driving as she no longer feels confident.”
After much research, the family found a program in Thailand that has seen promising results.
“We made the decision that Taryn will receive stem cell therapy at the Beike Biotechnology Hospital in Bangkok with her first injection scheduled for Nov. 7,” said Leason.
“Beike Biotechnology Hospital is one of the world’s largest stem cell facilities and leaders in stem cell research and we are hopeful that stem cell treatment will restore some of her lost vision, or at least stop the progression completely.
“The medical team is also reviewing Kennedi’s file and considering if she would benefit from having Nerve Growth Factor injections which prevent the death of nerve cells.”
The treatment is not performed in Canada or covered by provincial healthcare making the cost of this ground-breaking procedure something that the Leason’s will have to cover out-of-pocket.
“The total cost of Taryn’s procedure is $37,500 CDN,” said Leason. “It is a very costly procedure, but how can one put a price on their child’s vision?”
The family decided to reach out to relatives, friends, and both former and current community members for support, starting both a GoFundMe campaign online and a medical trust account locally.
“If you would like to help Taryn and Kennedi, a GoFundMe page has been set up https://www.gofundme.com/taryns-hope-for-sight or a medical trust account (account no. 6220-200264) has been set up at the TD Bank,” said Leason, noting that they have been overwhelmed with the generosity they have received to date.
“The Swan Valley community means so much to us still. We come ‘home’ to visit friends and family and are always guaranteed to see people who have open arms, coffee on and doors wide open to us.”
In just over a week of being up online, the GoFundMe page has raised more than $19,000 of the $30,000 goal.