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Bath boy with extremely rare disease wants to visit Lapland while he can still see and hear

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Thursday, July 18, 2019

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The family of a young Bath boy with an extremely rare life-limiting condition wants to take him back to Lapland while he can still see and hear.

Two years ago, Kai Baker was sent to the snowy wilderness through the Make A Wish foundation and his family were touched to see just how happy it made him.

Kai, now 9, has Myhre Syndrome – an extremely rare degenerative disease, which causes a huge range of complications.

He is only 1 of 100 people worldwide known to have this condition and one of only five boys.

Over the past year, Kai's condition has considerably worsened, losing part of his sight and hearing.

Now his loved ones are racing against the clock to get him back to Lapland while he can still enjoy it.

His mother Carly Smith, who has lived in Bath all her life, said: "Kai was diagnosed at five years-old as we had to have a specialist test which took five years.

"As he gets older things become more complicated.

“He’s lost some of his sight and hearing this year.

“We’ve literally been at the BRI or RUH every week seeing some specialist or another.

“There’s no cure. There’s just a lot of treatment to keep on top of things.

“He hasn’t got a very long life expectancy.

“It’s just about prolonging life as long as possible.”

Carly is in contact with others with Mhyre Syndrome online, supporting each other through the devastating disease.

She said: “I’m part of a close knit group on Facebook, but we’ve lost a couple in the last year.

“We all try to help each other out as nobody knows the syndrome better than the parents at the moment.”

Carly is focused on making the most of the time Kai has left – including planning another visit to Lapland.

“It would mean the world to him as he loves the snow – he is weather mad,” she said.

“We had Make A wish two years ago and we went to Lapland and he was the happiest boy there.

“He was just absolutely joyful.

“I can’t tell you how happy it made him.”

Kai’s Nan Sue Palmer, landlady of the Charmbury Arms in Bath, has been busy fundraising nearly £4,000. But there is still a way to go.

“My mum wanted to get him back there while he can still see and hear to have another special memory,” Carly said.

“We’re trying to get to £6-7,000 to have everything covered including insurance which is quite expensive for Kai.”

Now Carly’s best friend Mary-Jayne Lewis is joining the cause with a skydive fundraiser.

She said: “Kai is the strongest, bravest boy I know. No matter what he is going through he has a smile on his face.

“This year has been a hard year for him. His health isn't getting better. There has been a loss in his sight, his hearing and his mobility.

“Still he walks around with a smile as big as the world.

“One of his favourite thing in the world...... SNOW!!!

“So on the 10th August I am going to be doing a sky dive at 10,000ft. I am doing this to raise money to send this ray of sunshine to Lapland where he will be able to have so much fun in the snow.

“We are desperate to send him this year, we want him to be able to enjoy it without too many limitations.

“This little man goes through so much each and every week.

“I just want to do my part in helping him get a break from it all and just be a happy boy having the time of his life.

“If anyone deserves it he does.”

You can donate to the Lapland trip on Mary-Jayne’s Go Fund Me page here.

Author: Elise Britten
Source: Somerset Live
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5.0 from 1 vote
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