Greenwich family launch fundraiser for experimental treatment to save son’s eyesight
The family of an eight-year-old Greenwich boy with a rare terminal disease are raising money for a medical trial that could help save his eyesight.
Kavyansh Dubey, known as Kavy, was diagnosed with Battens Disease when he was just four years old.
The condition is extremely rare and leads to blindness, epilepsy, memory loss, developmental delays and loss of mobility.
Kavy’s father, Rahul Dubey, said: “We were completely devastated to know that Kavy will be with us for only a few more years.”
But Kavy’s parents have been given a ray of hope by a study that could stop the progression of his eyesight loss.
He successfully received his first treatment at Great Ormond Street Children’s Hospital on July 6, which involved an injection of enzymes into the back of his eyes under general anaesthetic.
But the study has no funding and is relying on money raised by the families of the children and the Batten Disease Family Association.
Kavy’s parents, Rahul and Swati, have set up a fundraising page in the hope that they can raise £15,000 for the experimental treatment.
Rahul said: “Even if we could save whatever little is left of his eyesight, he would not have to live in darkness for the rest of his life.
“Most importantly, if this trial works then so many children undergoing the brain treatment in over 20 countries across the world, who still have some form of vision, could benefit from this treatment – along with those diagnosed in the future.”
Rahul, who is a neurosurgeon, and Swati, who is trained as a dentist, noticed that Kavy was not developing communication and speech skills when he was two years old.
They took him to various specialists, who initially thought Kavy had autism and epilepsy.
But when he was four he began losing his balance, which led to his Battens disease diagnosis.
The eyesight study is not the only medical trial Kavy has taken part in, as he received treatment at Great Ormond Street in 2017.
This involved having a port fitted in his brain which supplies the missing enzyme.
After going to the hospital every two weeks for treatment, Kavy not only stopped deteriorating but also gained some new skills.
But despite the successes in some areas, his eyesight continued to get worse.
Rahul began researching solutions to the problem and with Robert Henderson, a consultant paediatric eye surgeon, and Professor Paul Gissen, pushed for a clinical study for eye treatment for these children.
A compassionate use programme was designed in 2020 and after a long approval process with various committees of the hospital and NHS England and further delays due to COvid, it was approved.
Kavy was one of the first two children to receive the ground-breaking treatment, which will be repeated every two months for the next 18 months.
The final outcome of the study will only be known at the end of the trial.
To donate to the fundraiser visit: https://www.justgiving.com/crowdfunding/rahul-dubey?utm_term=AjgnMJjw3
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Amelia Carrol was the first child to receive the eye treatment. The family have raised thousands of pounds. Great Ormand street know Amelia is first. Google ollies army or Facebook there page. This storey is incorrect information. A lot of family’s have fund raised nearly 200, 000 grand to start this treatment. Please contact the family’s involved and invested there time. Also speak to the hospital and they will say Amelia was first. It’s a little late for the family to fund raise now, when all the money has been raised by familys
Melanie, Thank you for your comment. Both children received treatment on same day over a difference of an hour and are the first children to get this novel treatment as per the clinicians treating the children. There is no race or competition among families or children, who is first or who is second. Those that raised money have done a great job and those that are raising now are trying to help as well as the treatment will not suddenly stop after 18 months of trial, if successful it will need more funding until it gets approved by NICE as an acceptable treatment. You may be aware how arduous this process is from the experience with NICE for the original Enzyme replacement therapy for brain. This will be donated to BDFA. Please read the line in the story,”But the study has no funding and is relying on money raised by the families of the children and the Batten Disease Family Association.” it already acknowledges the contribution of families and BDFA. I hope it answers your queries and puts your mind to ease.