Mum’s Lapland, Legoland and Disneyland wishlist for Wickersley schoolboy Sam

Mum’s Lapland, Legoland and Disneyland wishlist for Wickersley schoolboy Sam

By Admin | 31/05/2019

Mum’s Lapland, Legoland and Disneyland wishlist for Wickersley schoolboy Sam

THE mum of a boy with a rare, life-limiting condition has helped him compile a wishlist of trips to dream destinations to tick off before it is too late.

Grateful Natalie Evans (32) said she had been touched by the “amazing generosity” of supporters in her appeal for her eight-year-old son Sam, who has neurodegenerative condition known as Juvenile Batten disease.

Sam is already losing his sight and will eventually suffer a loss of movement and speech and Natalie wants to help the Wickersley Northfield pupil realise his dreams of going to Lapland, Legoland and Disneyland while he still can.

“The whole community has been amazing helping me raise money for Sam’s cause,” said Natalie.

“A lot of these people I don’t even know, so it goes to show there are still good people left in the world.

“I want to thank all the amazing people who are organising fundraising events for Sam’s cause.”

After hearing about Sam’s condition, Simon Mosley, who has a child at the same school —  said he was keen to help.

“I asked some others around the school if they wanted to do a charity challenge and now seven of us are preparing to take on the Yorkshire Three Peaks Challenge on June 22,” he said.

“We’re hoping to reach our £4,000 target to go towards Sam’s wish list.”

Natalie’s brother Ashley took part in a Tough Mudder event earlier this month as well as school mum Lyndsey Barrass hosting a race night.

She herself, other family members and teachers at Sam’s school are taking part in a colour dash at the end of the month.

Natalie also confirmed she’s had donation offers from the Rotherham Roundtable and Rotherham Lions organisations.

Natalie said Sam had been “a picture of health” as a little boy but she had noticed two years ago that he was holding a book up close to his face and decided to take him for an eye test as a precaution.

The opticians told Natalie her son was struggling to pick out 3D shapes and sent him to Rotherham Hospital for further tests but consultants were struggling to pinpoint a diagnosis, so Sam was referred to Sheffield’s Royal Hallamshire Hospital later in the year.

Doctors initially thought he had retinal dystrophy but, due to the lack of family links which ties in with this diagnosis, ran further genetic tests.

And after a six-month wait, the family received the crushing news of Sam’s condition last December.

“At first, we were told Sam was going blind, so when we got the news I was in total shock,” Natalie of Briarwood Gardens, Sunnyside added.

“It’s a condition I had never heard of before and has blown everything out of the water.”

Juvenile Batten disease causes a progressive loss of motor function, as well as affecting a person’s eyesight and only 3/4 children in the UK are diagnosed each year.

Natalie was told both her and Sam’s dad Luke carry the faulty gene — and there was only a one in four chance their son would develop the condition.

“We just had no idea we had the gene and because it’s so rare, there is currently no cure,” Natalie added.

The couple’s two daughters, Scarlett (6) and Alice (4), are also at risk of getting the disease but have not yet undergone any tests.

Natalie said she lives each day to the full for her kids, adding: “There are days where I am just surviving and days where I cry and cry, but I have to function for my children and do what is right for them.

“Battens disease has no set path, each child is different and Sam has just been amazing through it all, so we just take each day as it comes and appreciate every second.”

To support Simon Mosley’s Three Peaks team, visit https://www.justgiving.com/crowdfunding/simon-mosley-1.



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