Light for Sofi Sofi is 6 years old. She lives in Costa Rica. She was born with a condition known as Leber Congenital Amaurosis (LCA) with mutations in the RPE65 gene. This is a rare disease and very few people suffer from it.
The Prognosis: the total loss of vision (blindness).
The First Miracle: Six years ago there was no treatment that could help her, the light in her eyes was destined to go out. In January of 2019, the first miracle happened: THERE IS A TREATMENT for Sofi. Today we need YOUR help to achieve the Second Miracle: giving light back to Sofi's eyes.
The treatment: Luxturna is a genetic treatment, the first of its kind, and Sofi would be among the first to receive it. With this treatment further loss of vision can be avoided, and there's even a possibility of recovering the vision Sofi has lost until now. The Children's Hospital of Philadelphia (CHOP) has already given approval for Sofi to be able to receive the treatment.
The cost of treatment is very high, because Luxturna is what we call an "orphan" drug: there are few diseases that respond to it, and fewer patients that need it.
Treatment cost for both eyes is US $ 850 000, plus hospital expenses US $ 71 400, travel and stay expenses US $ 24 600.
So we need to raise a total of US $946 000 to finance this miracle. Please join us and help give light back to Sofi's eyes!
How am I and why am I running this campaign?
My name is Rebecca Castro, and I went to high school with Ivannia, Sofia's mom... We grew up in Costa Rica and our school was a very tight community, so much that 20 years after graduating we are all in touch in one way or another. That's how I heard about Sofi's condition and after finding out that a cure was available things started moving towards getting all the funds she needed. That's when I offered to help.
All funds collected through GoFundMe and all the kind people that donate through this campaign will go directly to the checking account created solely for Sofia, even though the account is under my name it is titled "Light for Sofi". This account will allow me to withdraw all funds donated to this campaign and it will give Sofi's parents direct access to a checkbook and debit card, as well to direct bank transfers. All this will help cover all main expenses in the hospital here in Philadelpia, without having to deal with the fees that may incur from using an international account.
Thank you for all your continued kindness!
Please continue to share her story, no donation is too small... There is a movement going on in Costa Rica now, in regards to Sofi, asking people to "hop on the giving boat" and ask 10 friends to join. Maybe we can do the same! Thank you again, and if you wish to learn more about Sofi and her journey, you can visit her website: luzparasofi.com