Our Story: Struggling to see in low light

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For years, I noticed that my children struggled to see in low light. At first, I didn’t think much of it. I thought maybe some people just didn’t see as well as others when it was dark, and I didn’t have a real understanding of eye diseases to know any different.

But over time, their vision seemed to worsen, and after extensive testing, I finally received the devastating diagnosis: my children have Retinitis Pigmentosa (RP). This condition, which they inherited from my husband’s side of the family, comes from a very specific dominant gene (PRPF31). While my husband and his father don’t show any signs of RP, they carry this gene, and unfortunately, both of my children inherited it. Even more tragically, the gene activated in both of them.

What does that mean? It means they are slowly losing their sight. And as their mother, I can’t and won’t accept that. There is no cure for RP right now, but I refuse to give up hope. I believe that with the support of people like you, we can cure this disease.  

I’ve created this nonprofit to raise funds for critical research, in the hope that one day there will be a cure for RP and other children like mine won’t have to face this heartache.  Already work has begun and there are medical trials for some forms of RP.  

Please, if you’re able, consider donating to help us take one step closer to that future. My children will always be my babies, no matter how old they get, and I will fight for them every single day. Thank you for your support.