Fighting For Lia

Our Daughter Lia was born in March, 2018. Like all new parents it was the happiest day of our lives. When she was 12 hours old, Lia failed her newborn hearing screening, 2 weeks later we learned she had profound hearing loss - she was deaf. We were crushed, scared, confused and didn’t know what the future held. When we found out Lia was a candidate for Cochlear Implants it gave us renewed hope, we had the option to give her the gift of sound, allowing her to communicate with the hearing world. We were coming to terms with the diagnosis and preparing for the work ahead.

On Friday, August 3rd 2018 we received Lia’s genetic test results - Lia was diagnosed with a rare genetic disease - Usher Syndrome Type 1B due to variants in the MYO7A gene. We were devastated. In addition to congenital deafness, Usher Syndrome Type 1B results in blindness at a young age due to Retinitis Pigmentosa. There is currently no treatment for Usher Syndrome or Retinitis Pigmentosa. We don’t have much time before her vision starts to significantly deteriorate and we are frightened…but we fight for her, because how could we not.

We fight because there is hope. We fight for treatments and cures we see on the horizon. We fight for the scientists, researchers and clinicians who are working to save our daughter's sight and others like her. We fight for those who hope to regain their vision and those who live in fear of losing it. Much progress has been made within the inherited retinal disease space. New gene therapy treatments have been approved by the FDA and clinical trials are currently in progress for other retinal diseases, but Usher Syndrome research is currently underserved, which is why we started Save Sight Now. It is a race against time. Please join us in our fight to save sight now.

Lia, Rosalyn and Justin