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Bid to help Lewis realise his dreams

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A fundraising campaign has been launched to help a young boy with a terminal illness fulfil his ‘bucket list’.

Lewis Jeynes, aged 10, suffers from a form of Batten disease that is so rare it took doctors more than seven years to fully diagnose.

He is believed to be one of only five children in the world with the Neuronal Ceroid Lipofuscinosis KTCD7 gene variant of the disease, and is not expected to live beyond his mid teens.

But the brave youngster, his family and friends are determined to make the most of life and have come up with a bucket list of places he wants to see.

They are hoping to raise £10,000 through the Lewis UK Pilgrimage fund to help make his dreams come true.

Mum Samantha Tolmie, 45, of Grange Road, Bessacarr, said: “Lewis is such an inspiration. He is in so much pain and it is heartbreaking to see but he still manages to smile.

“You can’t help but fall in love with him when you meet him. We want him to have a happy life.”

Lewis’ inherited disease means he suffers up to 40 seizures a day and is unable to move, speak or eat unassisted. He uses a wheelchair, is tube fed, and has a tracheotomy fitted to help him breathe.

He had numerous blood tests, biopsies and MRI scans for Batten disease when he developed a limp after his second birthday, but doctors were baffled after they came back negative.

His condition is so rare he was only diagnosed in July after specialists at Cambridge University studied his DNA for three years.

As part of his wish list he wants to go on a boat trip off Cornwall, visit the London Eye and Natural History Museum, fly in a hot air balloon and see The Lion King in the West End. He also wants to visit people who have sent cards and gifts via the Post Pals scheme, through which people can support ill youngsters nationwide.

The fund has already raised more than £6,000 and the idea is to send Lewis on his road trip in a specially-adapted ambulance.

Ms Tolmie said: “There are people all over the country who have sent him cards and it would be great to get around as many as we can. We know our time is short, but we want to make the most of it.”

A youngster whose plight has touched many hearts

Lewis’ journey has touched many hearts over the years, including that of Prince Harry.

His Royal Highness presented the youngster with the WellChild Best Brave Child Award at Lord’s Cricket Ground in 2007.

The family has kept wellwishers updated on his progress online at Lewis Jeynes which also raises awareness of Batten disease.

He has many supporters in nearby Goldthorpe, and he is the official charity of Dearne and District Football Club.

Two family fun days will be held at Dearne Advanced Learning Centre, Goldthorpe, on August 30 and 31, from 9am to 5pm. To donate visit Lewis’ UK ‘Pilgrimage’

 

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