Autoimmune retinopathy is an extremely rare auto-immune condition where the immune system attacks the retina causing loss of vision, but even more rare is that this type of condition is almost never found in children. We found this out after 7 months of looking for answers that made sense. As doctors were telling us all the possible things that it could be, our daughter - resilient and unwavering - started to learn how to walk with a cane and read Braille.
Doctor’s visits started to include MRI’s, CT scans, ultrasounds, x-rays, fluorescein Angiograms, countless IV, painful dilating eyedrops, and conversations about immunosuppression, gene testing, DNA, steroids and infusions.
We made a promise to her that we would fight this, that we would take her to see the best doctors to treat this condition. We started treating her auto-immune retinopathy with suppressing her immune system and a cocktail of antiviral and steroid prescriptions plus monthly chemo like infusions.
Leiah is 13 years old, she loves music, she loves broadway, she has a beautiful voice, she’s witty, funny, sharp, smart, caring, outspoken, and strong. Her heart is as big as the sky, and she has never seen the stars. Our hearts are broken because we can’t take this away. We will never understand why this is happening to her. I will never know how to convince her how magnificent the night sky is when the stars gleam above.
We are facing challenges with insurance for her medicine that we need to give her to save the vision that she has remaining. Each infusion costs $10,000, and she needs to be on this treatment for 2 years. I wish that we could help her on our own, but we need your help. We humbly ask for any contribution that you are willing to kindly give to help us continue her treatment and Save Leiah’s Sight.
Thank you for your prayers and consideration.
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