Sophie’s mom wrote us feedback in the form of a letter and with her consent, we decided to share it with you below… Sophie was born with Optic Nerve Hypoplasia, a rare genetic deficiency. She was diagnosed with chronic non-progressive encephalopathy, also known as cerebral palsy, when she was three months old, and also has … Read more
Tell us about Gibson’s condition. How did you find out and what were your first thoughts? At my 18-week ultrasound, the anatomical measurements showed the baby’s head was a little larger than normal. My OBGYN sent me to a specialist. She ordered multiple tests and concluded that there was a high possibility that the baby … Read more
Romanian patient Ovidiu Simion was diagnosed with pigmentary retinopathy, a condition which accelerates the degeneration of the visual field. Patients with this condition experience increasing loss of vision and may feel as if they are looking through a telescope due to the limited range of vision. Below is a brief interview describing the patient’s journey … Read more
The following story is a guest post from Debra Dollar, a young woman in the United States who was diagnosed with Optic Nerve Hypoplasia. She is currently raising funds for adult stem cell therapy. Please read and share her story. Family Fundraising Stem Cell Treatment for Optic Nerve Hypoplasia patient Hello everyone! My name is … Read more