Get all your news in one place.
100's of premium titles.
One app.
Start reading
Chronicle Live
Chronicle Live
National
Sonia Sharma

This young Newcastle United fan with one of the world's rarest incurable diseases has one wish

Can you help make this young Newcastle United fan's dream come true?

Kyran Richmond, who is nearly 16, has Juvenile Batten Disease - a rare condition that affects mainly the nervous system.

The youngster, from Chilton, County Durham, is epileptic and has poor eyesight.

And he is completely blind in his left eye and has around 5% vision in the right.

The moving story behind dad's one-of-a-kind 'scar' tattoo after daughter's life-saving heart surgery

His mobility has also deteriorated over the years and he has to rely on a wheelchair a lot more.

The disease will eventually leave him unable to walk or talk, and his life expectancy has been given as late teens or early 20s.

His family say they always focus on creating memories for Kyran, who is a massive Toon supporter and season ticket holder.

Now the teenager, who attends Oaks School in Spennymoor, wishes to attend his prom in a helicopter.

Kyran Richmond, who has Juvenile Batten Disease (family photo)

His loved ones are trying to make that dream come true and are appealing for anyone to help.

The prom is set to take place at Hall Garth Hotel and Country Club, in Darlington, on June 21.

Kyran’s mum Debbie, 39, who has two other sons, Cameron, 20, and Hayden, 13, said: "Kyran said he wanted to go to the prom in a helicopter. He has always said that but I didn't think we could do it.

"Then one of my friends said we could try to make it happen and an appeal has been put out on social media, which people have been sharing.

'I won't leave his side': Mum's bedside vigil as son, 17, fights for his life 

"This is quite a big thing for Kyran. We want him to be able to enjoy himself and make some wonderful memories.

"He would be over the moon if he could go in a helicopter."

Kyran was born healthy in June 2003. However, when he was six, he was diagnosed with retinitis pigmentosa - an eye disease where there is damage to the retina.

How a mum-to-be's car crash was a 'blessing' that saved her baby's life 

Then in 2011, following numerous tests, the family were given the heartbreaking news that Kyran in fact had Juvenile Batten Disease.

This is a rare genetic metabolic neurodegenerative disease and there is no cure for the type of strain Kyran has.

It is also believed he is the only one in the North East with this strain of the disease.

"He is deteriorating all the time," said Debbie.

"As a parent, it's hard. Every year on March 15, it breaks my heart to remember that was the day we got the diagnosis.

"We were told there's no cure, we can only treat the symptoms.

"We just want to give Kyran the best quality of life we can and help him.

"Although he does have bad days and can get frustrated and depressed, he is such a happy smiley boy.

"Everyone who meets Kyran just loves him. He goes to a boxing gym with his grandad, something he has been doing since before he was diagnosed, and the lads love him."

In 2011, family and friends set up a fundraising team to raise awareness and money for both the Battens Disease Family Association and Kyran’s personal trust fund for his ongoing needs.

For more information, visit the website here.

'He's the ultimate inspiration' - Steph Houghton on husband's brave motor neurone disease battle

Boy, 10, with severe cerebral palsy to undergo life-changing treatment - in Panama 

Sign up to read this article
Read news from 100's of titles, curated specifically for you.
Already a member? Sign in here
Related Stories
Top stories on inkl right now
One subscription that gives you access to news from hundreds of sites
Already a member? Sign in here
Our Picks
Fourteen days free
Download the app
One app. One membership.
100+ trusted global sources.