Story
Garry Twiname's great granddaughter, Amelia was diagnosed with albinism at 3 months old. Albinism effects the pigmentation of a persons eyes, skin and hair. The degree to which the disease effects a person varies. For some it effects only the eyes, however for Amelia it effects all 3. Without sufficient pigmentation, too much light can enter the eyes which, in combination with other factors caused by the disease, creates visual impairment or blindness. For Amelia, this diagnosis means she is severely visually impaired, and will face many challenges throughout her life. Albinism effects 1 in 17,000 people from all ethic backgrounds. Most of us take our eyesight for granted, and couldn't possibly imagine a life without sight. For Amelia, she may never get the opportunity to see the world. There is no cure or treatment currently for albinism.
Yet there is hope for the future, but we need your help to get there.
Following her diagnosis I have come across the work of Helena Lee and her team in Southampton. This work is breathtakingly amazing! Helena has devoted her lifes work to finding a treatment for albinism.
Helena's current work has the real potential to be a break-through in medical science, changing the vision of those with albinism, forever. Helena is working with a drug called 'levodopa'. People with albinism lack the correct genetic code to produce the chemical necessary to help the eye develop. So, in the womb and in early years, the eye doesn't develop in the same way as it does for most people. This drug is believed to replace the chemical that's missing, and it's believed the earlier the drug is given, the better the chances of significant visual improvement. What's even more amazing, is that this drug is already used safely in infants for a different condition. So Helena's work aims to show how it can be used to treat albinism.
She is right on the edge of making such a difference to so many lives, but scientific research costs money, which is why I'm asking for your help. I ask that you please give as much as you can help to go towards Helena's work, whether it be this current research or her next one.
We are aiming to raise £250,000 in total, because that is roughly the amount Helena will need to get to the next stage of her research and bring us one step closer to being able to give the gift of sight.
Money donated through this page will go to Helena Lee's research.