Daughter’s sight loss fate inspires mum to tackle Surrey Half Marathon

Becky Green, 41 from Aldershot, will be lacing up her trainers for the first time in a few years, all to raise money in support of her daughter Millie, aged 8.

During the February half-term in 2023, the family were shocked to be told that Millie had Best disease, a rare inherited condition caused by mistakes or mutations in the BEST1 gene, which can lead to central vision loss.

Millie went for tests at Moorfields Eye Hospital, where getting the diagnosis “was obviously quite a shock because it's actually not something that we were consciously aware of as something that ran in our family,” explained Becky.

“For want of a better phrase we went into this blind, because we didn’t really know what Millie’s diagnosis would mean.

“The idea of her losing her sight is desperately scary, even more so because we don’t have any experience to compare it to. We didn’t know what it meant, what support, if any, was out there and what her future could look like. Unfortunately, with the condition that Millie has got, they can't really give us a timeline of what’s going to happen and when.”

Becky describes her daughter as “a real live wire with the most amazing sense of humour and imagination” as she tries to navigate her daughter through childhood with the knowledge that her sight will likely be affected in the future.

Becky said: “We’ve been told it will affect her really quite significantly. So it's worrying, we even started thinking if she’ll need to learn braille, or would we need to get a guide dog? What would it mean for her education?

“But then there’s been a lot of reading about Best disease, and research and our hope is that if things do change it will be as she’s older and finished school so she will have a solid education.

“I'm desperately trying to cling on to the hope that she'll at least get into early adulthood fairly unaffected by it all, then at least she'll be more mentally mature and take on the challenges that she'll face rather than have to go through the struggles during her teenage years when everything is tough as it is.”

Becky now faces her own challenge of tackling the 13.1 mile race which starts in Woking on Saturday March 22nd. She is raising not only awareness of macular disease – the biggest cause of sight loss in the UK - and specifically Best disease, but funds to secure further research thanks to national sight loss charity, the Macular Society.

The mum of three said: “I Googled Millie’s condition and that’s how I found the Macular Society website, which had a really nice approachable summary of explaining Best disease, and describing what might happen. It wasn't terrifying, it was factual and accessible information that was able to point us in the direction of where to go next.

“I found some support groups on Facebook and connected with other parents, and we’re kept up to date with information and developments. I've joined a couple of the webinars and other bits and pieces, to find out about some of the research that’s moving forward in this and I‘ve found that actually really quite encouraging, and I’ve heard how close we are with research and that really buoys me.

“We’ve found a lot of support which has given us facts and information to understand what Millie is dealing with. We were devasted when Millie got her diagnosis, we questioned if she was going to live a good life with sight loss, but I think what the Macular Society does is demonstrate that that is possible because ultimately, she will have the best support around her to live the best life she can.

“Without the Macular Society, I think we probably wouldn’t have such a positive outlook on life for Millie with a visual impairment.”

And Becky hopes her involvement in the Surrey Half Marathon, as well as future fundraisers, will be inspiring acts for her daughter.

“Personally, it's such a mental and physical challenge which is really positive for me and I want Millie to see me doing challenges like this. It appears she will face her own hurdles ahead when her sight changes, so I want to be that positive role model for her so she can overcome them too,” she said.

Becky’s fundraising page is welcoming online donations here: https://www.justgiving.com/page/becky-green-2

Nearly 1.5 million people are currently affected by macular disease and many more are at risk, with around 300 new diagnoses every day.

The disease can have a devastating effect on people’s lives, leaving them unable to drive, read or see faces. Many people affected describe losing their sight as being similar to bereavement.

There is still no cure and most types of the disease are not treatable. Age-related macular degeneration (AMD) is the most common form of macular disease, affecting more than 700,000 people, usually over the age of 50.

For more information on macular disease and to get support, call the Macular Society Helpline on 0300 3030 111, email [email protected] or visit the website: www.macularsociety.org