Mum vows to help fund pioneering research into heart breaking, rare, degenerative condition that could leave 8-year-old son blind
Stargardt disease, which affects 1 in 10,000, detected after Goffs Oak youngster has eye test at Vision Express Cheshunt
Suspecting her eight-year-old son may need glasses, a Goffs Oak mum visited her local optician, and within two weeks was given the news that her child would lose his sight due to a rare degenerative condition called Stargardt disease.
Teacher Bhavna Tailor was stunned to discover Ethan suffers from the hereditary condition, which is currently untreatable. The mum-of-two has committed to raising awareness and funds for research into Stargardt, while helping Ethan make the most of his vision with a bucket list of ‘visual’ memories he wants to capture while still partially-sighted.
Bhavna is grateful to the Vision Express optometrist who made the crucial referral that led to a speedy diagnosis of the condition by Moorfields Eye Hospital specialists, allowing the family time to educate themselves, and prepare for a future in which Ethan could lose 100% of his sight. As part of the treatment, the family is now aware that Ethan’s three-year-old sister has a 1 in 4 chance of inheriting Stargardt, and will be monitored as she ages.
The family’s world was turned upside down after Bhavna noticed Ethan was struggling to read road signs on a recent holiday. Concerned, they headed for a local optician, but unsatisfied with the conclusion that he didn’t need glasses, she headed to Vision Express Cheshunt. While the eye test, conducted by optometrist Anusha Kasaven, confirmed this, she made a referral because Ethan has such impaired vision. Anusha explains: “During the eye test it became clear that Ethan’s sight had already deteriorated to below the minimum standard to drive, so it was important that this was investigated to find the cause.”
Bhavna said: “I was in absolute shock. Within two weeks of visiting Vision Express, and following specialist tests at Moorfields, we were told the devastating news that Ethan will lose his central vision. That’s a huge thing to come to terms with. Even now, every morning when I wake up, that thought breaks my heart.”
However, the charismatic Goffs Oak Primary pupil is taking the news in his stride. “He says ‘everyone has a problem and this is just mine’, and he wants to make the most of things while he can see. He’s just a star”, adds Bhavna.
Ethan recently delivered a school assembly about his condition to help his classmates learn more about it. He explained that ‘anything is possible’ and that the achievements of the Paralympians show how people can overcome their personal setbacks. Double Paralympic sprinter Libby Clegg, who took a gold in Rio last month, has Stargardt and is registered blind.
Like macular degeneration, Stargardt affects the central vision and is a progressive condition with no known cure. It can lead to considerable vision loss and while this can take years, some sufferers lose sight rapidly. Ethan was diagnosed following his eye test one year ago, and by January 2016 was registered as partially-sighted. He now uses a magnifier to read, wears sunglasses all the time to protect his eyes from further damage, and has become unable to recognise his friends in the playground.
As well as making family time to capture visual memories, including a VIP trip to Universal Studios in California, a visit to Yosemite and fishing trips, Bhavna, who describes herself as a ‘mum on a mission’, is dedicating her time to finding new treatment options and fundraising.
She says; “Ethan is part of a research trial and world-leading experts in the field are optimistic that Stargardt can be treated because it’s caused by just one faulty gene. Although we don’t know the prognosis for sure, there is hope. The barrier isn’t science, it’s cost, so we’ve been trying to raise as much money as possible for further research, as well as educating people on the disease.”
Experts in the condition believe that stem cell and gene therapy – an emerging area of research in ophthalmology - could hold the answer to helping Stargardt sufferers.
The family has already raised almost £3,000 for a recent comedy night and a Just Giving page accepts further donations: www.justgiving.com/ethansvision
Vision Express Cheshunt store manager Stuart Burrow said; “Ethan is the only customer we’ve seen with this rare condition, and we’re pleased we could make the referral so the family could get a quick diagnosis.
“Most conditions can be treated effectively and the sooner they are picked up through an eye test, the better the outcome, so we’d like to urge all parents to follow Bhavna’s example and ensure their children go to see an optician regularly. And, if concerned about vision symptoms, don’t hesitate to get a second opinion.”
About Vision Express
Vision Express is the third largest optical retailer in the UK and part of GrandVision,the global leader in optical retail operating across 43 countries, spanning over 6,000 stores and online.
With more than 390 stores nationwide, Vision Express first opened its doors in Newcastle in 1988. Built on a passion for the profession, it has gone from strength to strength, driven by a commitment to unparalleled customer service and providing the best individual optical care, the right product and great value. Customers can select from a vast range of genuine designer brands and the latest technology lenses, through to complete glasses from £39.
Vision Express is considered one of the leading and most trusted opticians in the UK and Ireland, with its European offering supported through sister eye care brands Grand Optical, Solaris and Generale D'Optique.
With around 4,000 employees, Vision Express makes a significant difference to the communities it operates within, and the organisations it chooses to support. As part of its commitment to Vision. Taken Seriously, and as a responsible and caring retailer, Vision Express is proud to partner with a range of healthcare charities, which have touched the lives of customers and teams. These companies provide vital support to people affected by vision-related conditions. They are part of the Vision Express Charitable Partnerships and include: