There are a great deal of people in our city who know of the Leason family, and a great deal of people within our community who know about the recent turn of events that will be severely altering the life of nineteen year-old Taryn Leason. Leason is a student, teammate, classmate, friend, sister, and daughter who just recently received news from her family optometrist that turned shock to disbelief. It was but a routine eye exam that had the Leason family seeking community support in any way possible upon hearing the results. After completing a procedural scan of the back of Leason’s eye, her optometrist found that Leason was missing cells. This misfortune was then given a name; Stargardt Disease. “My immediate reaction was shock,” said Leason. “I didn’t know what to say or think.” Stargardt Disease, also known as Stargardt macular dystrophy, juvenile macular degeneration, or fundus flavimaculatus, is a disease that causes progressive damage or degeneration of the macula, which is a small area in the center of the retina that is responsible for sharp, straight-ahead vision. “So basically, depending on the colour of the object compared to the background, when I look directly at it, it will disappear. For example, I can only see things like clouds when I don’t look directly at them. This affects my everyday life dramatically. Reading is tough; I need to look above or below the words to see them. Driving got really bad. On overcast days it was difficult to see silver or beige vehicles,” informed Leason.
After a great deal of research, the family found that treatment for Stargardt Disease was rare and few; however, there is a treatment option available at Beike Biotechnology Hospital in Bangkok, Thailand. Beike Biotechnology Hospital is one of the world’s largest stem cell facilities and leaders in stem cell research. The treatment is not performed in Canada or covered by provincial healthcare. The cost for the procedure is $37,500 CAD. Though extensive, it is necessary for Taryn to see improvements in her vision or to at least stop the disease from progressing any further. The rigorous treatment is run for 20 days and consists of stem cell injections in arms, back (through epidurals) and eyes, and will involve time spent in rehabilitation for post treatment. Leason has been accepted for admission as a patient for the treatment this fall; however dates have not quite been set. “My family were told two statistics from a general stem cell test; 18/19 patients experienced that their vision loss stopped progressing, and 50% of patients see improvement. We talked to a man whose vision went from 20/200 to 20/25. Some patients can see improvements in only two days. I definitely have my young age on my side. We are waiting on dates still, but we are hoping November. The sooner the better, before my vision gets even worse,” informed Leason. Leason mentioned that she hopes for her vision to improve; however, it would be amazing for the loss to stop progressing further as well. Haplessly the misfortune doesn’t end there as Stargardt Disease is in fact hereditary, and Taryn’s younger sister, Kennedi, has a mark on her retina that is consistent to the one found on Taryn’s. Thankfully, Kennedi’s vision is still at 20/20 and there have been no signs of vision loss. There is not much the family can do unless her vision also begins to degenerate, so Kennedi will continue to grow up like any other thirteen year old would. “Without a doubt my parents took the news harder than me. I didn’t realize how hard it was to see someone going through something like this until I found out about my sister. My dad was extremely upset; he said as a father, his job is to fix things. And this is something he can’t fix,” stated Leason.The Leason family set up a GoFundMe page explaining their story and financial goal and reached out to the community for a helping hand. The amount of support received was incredible, after just one day the Leasons’ received almost $12,000 from family, friends, community members and even strangers. Right now the family has received more than $17,000 of their $30,000 goal. Costs for the treatment in Thailand are extensive; however, given the tremendous amount of support from the Martensville community, family and friends, the treatment is possible. “There are no words for how grateful we are. Martensville, as a community, has provided so much love and support and I just wish I could express how much it means to us,” said Taryn.
If you wish to offer financial support for Taryn’s treatment in Thailand, please visit https://www.gofundme.com/taryns-hope-for-sight.
Note on featured image
The Leason family, (left to right) Tricia, Taryn, Kelly and Kennedi