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A young racing enthusiast battling blindness is making the most of his eyesight before his driving dreams are ended.

Ethan Tailor, nine, suffers from Stargardt disease, a rare degenerative condition that could blind him and has already left him relying on a magnifier to read at Goffs Oak Primary School.

Mum Bhavna, from Goffs Oak, was heartbroken when her son turned to her a year after he was diagnosed in January 2016 and said 'mummy, I am never going to be able to drive am I?'

But after featuring in a BBC news report, the mother of two-time world champion go-karter Matt Luff, 16, was compelled to reach out and offer a one-to-one session last Tuesday (August 29) at Brentwood Kartway.

Ethan described the experience as 'the best day ever'.

"This really made his year, he loved it and it was such a kind-hearted thing to do," said Bhavna.

"Matt has also invited him to watch him race at Silverstone. He has never been there so he is really excited for it. He said go-karting with Matt was the best day ever."

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With no cure or current treatment available for the disease, Ethan's family does not know when he could lose his sight completely.

Ethan was registered as sight-impaired in January 2016 and cannot even recognise his friends in the playground.

As the disease is hereditary, there is a 25 per cent chance of Ethan's four-year-old sister, Elise, inheriting the disease.

But Bhavna is determined to help her son make the most of his sight and raise awareness of the disease.

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She said: "As a mother, I feel a little helpless but we will still fight his corner and do all we can to give him the best.

"The hardest part is not knowing how long it will take [for his sight to go]. He can only read two lines off the sight chart now."

Ethan has remained upbeat and last year delivered a school assembly to explain the disease to his classmates.

His message was that he can overcome the physical problem, and he pointed to the example set by Paralympic sprinter and gold medallist Libby Clegg, who also has Stargardt.

Mrs Tailor sets time aside for the family to capture visual memories, which have included a VIP trip to Universal Studios in California, a visit to Yosemite and fishing trips.

The rest is here:
Cheshunt boy facing blindness, 9, races with world champion - Hertfordshire Mercury

This entry was posted on September 5, 2017 at 11:44 pm and is filed under Blindness. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed. |