Bhavna’s world changed forever in September 2015 when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, degenerative retinal condition that slowly leads to sight loss.
Ethan was struggling with his distance vision, so Bhavna went to the optician to see whether he needed glasses. After visiting two different opticians, she received the same consensus: Ethan wasn’t reading the sight chart well and corrective lens weren’t helping. Not knowing what that meant, Bhavna booked a private, emergency referral at Moorfields Eye Hospital where she received the diagnosis – Stargardt’s.
Bhavna received two shocks that week: a rare diagnosis for her son and the knowledge that she and her husband were carriers of the faulty Stargardts gene. This meant that there was a 1 in 4 chance of their children having Stargardt’s.
Within days of receiving the news, Bhavna exhausted the internet and found out everything there was to know about Stargardt’s. She reached out to charities, groups and sight-loss communities looking for help, answers and connections. She realised, “There wasn’t any specific support for Stargardt’s.” Despite the heart-breaking diagnosis, Bhavna wanted to do something positive and reach out to others affected by Stargardt’s. This was when she decided it was up to her to establish the first U.K. Stargardt’s patient group.
“I don’t ever want anyone to go through what I went through. I want there to be a clear pathway from the minute they’re diagnosed, they know there is this charity and this charity and this group, and not just our charity, but all the different support services there are and being connected to other people would make such a difference.”
It was in her rare journey that she found Beacon and joined our Patient Group Mentoring Programme. She was paired with Kamlesh, who she hails as the “game-changer.” “Honestly, if it wasn’t for him and the programme, I don’t think that we’d be where we are now. It really set us up for the right direction and focused us on what we needed to do.” Together, Bhavna and Kamlesh have:
- Registered Stargardt’s Connected as an official charity
- Established a Board of Trustees
- Established and support a global community of Stargardt’s patients and families
- Been featured on BBC’s Children In Need alongside Ethan who is now 13
- Set up a website and built a team
- Have a Charity Ambassador
They aren’t stopping there either! The pair are currently working on establishing a patient registry to encourage participation in research. Bhavna is building her community via virtual Zoom meetups for patients, families and kids, and is hoping to bring on paid staff in the near future!
“I wasn’t thinking about starting a charity, all I wanted to do was meet a few people in a pub.”
“If you’re setting up a patient group, which I did, Beacon has been brilliant with the resources, the signposting and having the Empowerment Programme. All of those really helped establish and set up our charity. Without that we wouldn’t have got to where we were. Once you’re there with the foundation, action plan and targets, you can carry on hitting your targets.”