Always on
This project successfully funded on 11th May 2026, you can still support them with a donation.
Help Maya Raise Money to See Again
Leeds, England, United Kingdom
Aim
Help raise funds for Maya to explore regaining her vision
There is nothing that prepares you for hearing the words, “Your child is losing her vision.”
A year ago I noticed Maya was finding it difficult seeing things... small episodes such as pointing at things, Maya would claim she could see what I was pointing at but I could see she wasn't looking in the same direction. This worried me and a few weeks later Maya admitted that her school work was suffering because she couldn’t see properly. Concerned, I asked Maya to read with me and it became apparent that Maya was having to concentrate extremely hard on being able to see the text even though the book was close up to her face. I was astonished, worried and couldn't understand what was happening.
Several things happened at once, I booked an opticians appointment for that weekend and went into school to discuss with her teachers whether they had any concerns in relation to Maya's learning and they too had picked up at the same time as myself that Maya was struggling with her sight.
Next up... the opticians appointment....
The opticians claimed, Maya was doing it for attention. I was not convinced and requested a referral to the hospital. Not long after, we ended up at the hospital eye clinic, in one afternoon after being poked and prodded Maya and I were informed that Maya was in the process of losing her vision due to retinal hereditary disease.
This diagnosis felt abrupt and lacking in direction. I immediately arranged for a second opinion. Where a much more comprehensive and complete diagnosis (Stargardt disease) was provided.
Maya who is only 10 years old has been informed that the disease she has is currently not curable and as you can imagine that for a young girl of her age who is intelligent, empathetic, studious, creative and loving to be told something so life changing at such a young age is devastating.
Maya has already began compiling a list of places she wants to see and experiences she hopes to have before her vision deteriorates further. As her parent, it is heart breaking to watch.
There is hope. Research into Stargardt disease is progressing, with emerging clinical trials offering potential to halt further deterioration. Maya has now been placed on a clinical trial list aimed at stopping the progression of her condition. Currently she has no central vision and her peripheral vision is blurry.
There is no guarantees, however just like any other parent or caring family member I want the best for my child and will explore every possible avenue. Any improvement is worth fighting for and therefore We (Myself/ Maya and her brother), are seeking help in raising money to help Maya on her journey to experience her life to the fullest.
We are raising funds to support:
*Access to specialist consultations and potential private treatment pathways
*Travel and associated costs for clinical trials
*Adaptations for Maya to live an independent life
*Experiences and travel that allow Maya to see and experience the world while she still can
There is no end date for us, there is no giving up. We will do what we need to do to help her get to where she needs to be so that we can explore the possibility of Maya regaining some of her sight. To take her to some of the places she wants to visit, we are as family and friends aiming to take up running in the process and hopefully bring you along on her journey no matter what the future holds.
Thank you for taking the time to read this.
Maya's mum
Funding method
Keep what you raise – this project will receive all pledges made