Roberts family raise funds for vital research into Stargardt disease
Rose Roberts was diagnosed with Stargardt macular dystrophy when she was seven years old.
Now, aged fifteen, Rose is raising funds for vital research that could find a cure for the condition.
Rose had been doing very well at school when suddenly her reading started to drop off and she mentioned she couldn’t see the board. Her parents took her to an optician for what they thought would be a routine check-up and she was soon diagnosed with the genetic eye condition Stargardt disease. Since then, Rose’s eyesight has deteriorated and she no longer has central vision, leaving her severely sight impaired.
Rose’s mother Tina spoke of the family’s initial shock on receiving the diagnosis:
“It was a bolt out of the blue when Rose was diagnosed. It was so hard to think of your child not being able to do the things other children are able to do. Rose’s mobility is going to deteriorate as she gets older. She’ll be seventeen in a couple of years and sadly won’t be able to drive. Right now, Rose is great around her own environment, but if you put her somewhere new, then it’s tricky. Things we take for granted will become more of a challenge. Imagine being in a town centre and not being able to read a sign from a distance, or find your way to the toilet easily, or be able to drive to get to work.”
Shortly after Rose was diagnosed, the Roberts family found Fight for Sight. They have been fundraising ever since with family, friends and their local community.
Tina said: “Raising money for Fight for Sight has helped us be more positive. We’re all working towards a goal – finding a cure for Rose’s condition, both for her and for other families - we’ve just got to raise enough funds. We’re not sitting back hoping it will all come to us.”
Rose said: “People take their sight for granted. They don’t realise how much they should treasure their eyesight until something happens to it. If we can help other people who have this condition, it’ll all be worth it.”
With more funding, new treatments can be developed to slow down or stop sight loss from Stargardt disease.
Currently, researchers are looking at gene therapy as a way to repair or replace the faulty ABCA4 gene which causes Stargardt disease in the affected eye cells. Following early research funded by Fight for Sight, scientists at the University of Oxford have developed a new technology that is being used to test a potential treatment for Stargardt disease, using a harmless virus to carry the correct genetic information into cells. It’s hoped the new therapy can soon be taken to clinical trial and could ultimately lead to a new treatment that could transform the lives of people living with the disease.
The only barrier is funding – please donate now to support our ground-breaking research.