Langwith family aiming to give little Leo 'happy memories' after devastating diagnosis

Amy Nettleship said her “heart sank” when she and partner Ricky Hall were told their five-year-old son Leo had Duchenne muscular dystrophy.

Duchenne’s is a progressive and fatal muscle-wasting disease almost exclusively affecting boys, with the NHS saying “people with the condition will usually only live into their 20s or 30s”.

It was Leo’s late development which led Amy and Ricky, of Langwith, to seek medical input.

Leo, who used to bum shuffle to get to where he wanted, did not walk until he was 18 months old.

Amy said: "He was also a late talker, Leo started nursery in January 2021. I thought this would bring Leo on massively.

“It helped bring on words, but I was still worried as he didn't have much communication when starting full-time school in September 2022.

“We had a meeting with Leo’s reception teacher and was told Leo was far behind the other children with learning.

“I again thought this was because he struggled to communicate. I thought speech and language would help with Leo talking in no time."

Amy said it had been suggested her son could be autistic, which she felt at the time explained his development delays.

With this in mind, the Langwith parents decided to visit the doctor for answers.

In May, Leo was assessed by his GP and underwent a series of short physical tests.

Amy said it was then the doctor said it may be “something more” than autism.

Leo had a blood test on June 27 to try to identify the issue.

Amy said: "We were so nervous, but Leo was so amazing, and it didn't bother him in the slightest.

“After the test, we were so impatient. I was ringing the hospital every couple days to see if the results had come back.”

Weeks later, Amy said they finally got some answers and found Leo's bloods were showing higher than normal enzyme levels.

On their next appointment with Leo’s paediatrician on August 23, Amy said their “biggest fears” were confirmed.

The doctor said Leo's generic results “did not look good” and suggested Duchenne muscular dystrophy.

Amy said: "My heart sank. I was trying so hard to be brave for our boy.

“Leo doesn't understand and we cannot show him that we are sad.

“We don't want him to wonder what's going on. Our life changed suddenly.”

Since finding out the news, Leo's family have started raising money to give Leo as many “happy memories and opportunities” as possible, with the launch of a GoFundMe page at shorturl.at/uwAT6

On November 4, Leo’s dad Ricky and uncles Jack and Adam will climb Snowdon, England and Wales’ highest mountain, carrying weights on their back to kickstart fundraising efforts, with weights symbolising the “strength” of their family during this unimaginable time.

The fundraising target is £2,000 with more than £900 raised so far.

Amy said: "All donations are greatly appreciated. Donations will prolong the smile on our gorgeous boy’s face creating memories for our family to remember our little hero.”