Feb 17, 2016

Rallying Together To Treat Retinitis Pigmentosa (RP): Salvina’s Story

Like most mothers, Anastasia has spent a lot of time dreaming about her child’s future. She’s watched her daughter Salvina belt out a song and wondered if she’ll someday be on stage. She’s seen how excited Salvina is to go to school every day and pictured her teaching a classroom full of children. Watched her playing with dolls and imagined her with a family of her own.

What Anastasia didn’t imagine was a future with complete vision loss. Two words were enough to turn her world, and Salvina’s future, upside down: retinitis pigmentosa (RP). It’s a genetic eye disease that will slowly erode Salvina’s sight, until she can’t see anything at all.

Unless we can help fund a breakthrough in sight-saving research.

Even when Salvina was a baby, Anastasia suspected something was wrong. Salvina would look off to the side when her mother was right in front of her—as though she wasn’t even there. At first, Anastasia thought she just needed glasses, but by the time Salvina was three years old the problem was clearly much worse.

When Salvina was diagnosed with RP, Anastasia and her husband didn’t know where to turn. They couldn’t believe that this bright, curious little girl would eventually lose her ability to see the world around her. Without a cure, someday she won’t even be able to see her parent’s faces.

In their desperation, Anastasia and her husband started researching everything they could about RP. That’s how they found Fighting Blindness Canada (FBC)—and, in turn, how they found hope.

Thanks to the generosity of our donors, FBC has been able to fund research that could change the lives of so many people just like Salvina and her family. In fact, over $30 million in research funding from FBC has resulted in over 600 new discoveries in areas like stem cell research, gene therapies and technological developments, just to name a few.

Take FBC-funded researcher Dr. Philippe Monnier, for example. His research into RP is making incredible progress toward understanding the disease and developing a treatment to prevent vision loss. He, and other Canadian researchers, are making amazing strides toward understanding why vision loss occurs, how it can be slowed or stopped and how sight can be restored.

Salvina is now five years old. She loves music, dancing, singing and skating, but she’s happiest playing with her big brother, Michael. It’s been a couple of years since her RP diagnosis, and the family is working hard to fight back against blindness.

“At first we were devastated. But when faced with doing nothing or doing something,” shares Salvina’s dad, Giovanni, “we chose to do something.”

The family rallied together to fundraise and “help researchers do their job.” From bake sales, to dance parties, to garage sales, to an annual Eye Ball Gala, they have raised over $55,000 in two years, in part using our Sight-Savers fundraising tool.

“This is our way of contributing and teaching our daughter to advocate for herself,” says Salvina’s dad.

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