Help Nelani keep her eye sight

Nelani is a very bright 8year old girl. She loves school and cannot wait to tell anyone when she has full marks for a test. Last year I took her to a optometrist due to her eyes that were sensitive to light. This year January she went for her new set of glasses, however this time i noticed her eye sight was getting worse. Specialist after specialist has now confirmed my 8year old bright star has retinistus pigmetosa for which there is no cure.

She now needs to be enrolled into a school for the blind.

There is however a specialist is berlin who is testing treatmens. I will try any means nececary to ensure my child does not end up completely blind.