Ratoath mum’s plea for more time with teen son after rare MND diagnosis

A Ratoath mother has made an emotional plea for more time with her teenage son after he was diagnosed with a rare form of motor neurone disease.

Linda Kane said her family’s world was turned upside down after her 15-year-old son Kyle began developing a limp shortly after Christmas, eventually leading to the devastating diagnosis.

The teenager, who lives in Ratoath with Linda, his dad Karl, and siblings Aaron, 21, and Layla, 14, is now receiving care for the condition, which has no known cure.

The family is desperately hoping Kyle may be eligible for clinical trials or treatment options which could slow the progression of the disease.

“He loves football, GAA, pool, darts, cycling and going on holidays. He’s just a lovely, happy boy," said heartbrokem mum Kinda.

Kyle’s symptoms first became noticeable after Christmas when he began to develop a limp.

“His school had said that he was complaining that his legs were tired,” Linda explained. “Then, after Christmas, we noticed a limp.”

The family brought him to their GP, where an X-ray revealed what appeared to be a tiny fracture in his left hip.

Kyle was advised to rest, and while the family hoped the problem would resolve, his limp continued to worsen.

“We thought it was a fracture and that it would heal,” Linda said. “But the limp was getting worse.”

Further investigations followed, including scans at Temple Street Children’s University Hospital in Dublin.

The family had also gone on holiday to Tenerife, where Kyle needed to use a wheelchair because of the difficulty he was experiencing walking.

After returning home, he underwent nerve conduction studies, which indicated neuropathy. Genetic testing was then carried out, eventually revealing a mutation in the FUS gene.

The results led to the diagnosis of a rare form of motor neurone disease.

Linda said the family was told that Kyle’s condition was extremely uncommon, with doctors indicating that he may have a limited amount of time.

The family has been left trying to come to terms with the diagnosis while also attempting to find out whether there are any treatment options, trials or specialist supports available.

“It’s just heartbreaking,” Linda said. “You never think something like this is going to happen to your child.”

Kyle attended St Paul’s National School in Ratoath and is now attending St Michael’s House School in Dublin, where he is receiving support suited to his changing needs.

Despite the physical challenges he is facing, Linda said Kyle remains focused on enjoying life and spending time with those closest to him.

“He loves his football and his GAA,” she said. “He loves pool and darts, and he loves going on holidays. He’s always been very active.”

The family recently enjoyed a particularly special day when Kyle attended Katie Taylor’s latest fight at Croke Park.

Linda said the experience meant a great deal to him, with the family determined to continue making memories together.

“He had a brilliant time,” she said. “People were so kind to him.”

The family has not yet told Kyle the full extent of his diagnosis.

Linda said they have explained that there is something wrong with his legs and that doctors are working to try to help him, but they have not told him that he has motor neurone disease.

“It’s just too much for him to take in,” she said.

While the family is facing an uncertain future, Linda said their focus is on giving Kyle as many happy experiences as possible and ensuring he knows how loved he is.

A GoFundMe fundraiser has now been established to help the family create lasting memories together.

The fundraiser explains that its purpose is to raise money so the family can make “as many happy and lasting memories as possible” in the time Kyle has left.

Almost €30,000 had been raised within a matter of days, highlighting the huge wave of support for the Ratoath family.

Linda said the generosity and kindness shown by friends, family and members of the wider community had been overwhelming.

“It means so much to us,” she said. “We just want to make the most of the time we have with him.”

The family is also continuing to seek information about Kyle’s condition and whether he may qualify for any clinical trials or emerging treatments.

Motor neurone disease affects the nerves responsible for controlling movement. As the disease progresses, muscles can become weaker, affecting mobility, speech, swallowing and breathing.

Kyle’s diagnosis is particularly rare because of his age and the genetic mutation involved.

For Linda and Karl, however, the medical terminology is secondary to the reality of seeing their son struggle with things he once took for granted.

“He just wants to be able to do what every other 15-year-old does,” Linda said.

The family’s hope is that further research, specialist advice or clinical trials may offer Kyle more time and, ultimately, more options.

“We just need more time,” Linda said. “We want to make memories with him and give him the best life we possibly can.”

Support the fundraiser here