'Motor Neuron Disease claimed our son at 14 - it can affect anyone at any age'

The family of a teenage boy who tragically passed away after being diagnosed with motor neurone disease (MND) has issued a warning that the rare and degenerative condition can strike "anyone, at any age, at any time."

Kyle Sieniawski, 14, from Pontypridd, Rhondda Cynon Taf, passed away on November 27, after being diagnosed with MND less than a year prior. The disease typically affects people aged over 50, making Kyle one of the youngest known victims of MND in the UK.

Kevin Sinfield, a former rugby league star who is currently running seven ultramarathons in seven days to raise awareness for MND, expressed his support to Kyle's family. He reassured them that the MND community would always stand by them, and Kyles memory would live on.

Kyles mother, Melanie Sieniawski, spoke with BBC Breakfast, emphasizing that MND can impact anyone at any age. "We need to raise as much awareness and funds as we can, to find a cure as soon as possible," she said.

His father, Mark, shared the pain they endured, calling the experience "horrific" and described watching their son struggle with the disease as "horrendous." "We really need to spread awareness and keep pushing for a cure," he added.

In January, at the age of 13, Kyle was diagnosed after experiencing a loss of mobility in his arm. His condition rapidly worsened, and he eventually lost the use of all his limbs.

After his diagnosis, Kyles family desperately sought to bring him home from the hospital but faced challenges as their home could not be adapted to accommodate his needs. For over nine months, his parents and brother, Liam, lived alongside him at the Noah's Ark Children's Hospital in Cardiff. During that time, Kyle relied on a breathing mask and feeding tube, and was later moved to intensive care after an infection developed.

Kyle's family described him as a "brilliant" and "mischievous" young boy whose vibrant personality shone through despite the illness. His father, Mark, recalled how Kyles presence left a lasting impact on everyone he met. "He was a fighter, and so many people visited him in the hospital. They all thought he was amazing," Mark said.

Ex-Leeds Rhinos rugby player Kevin Sinfield, who is raising funds in honor of his friend and former teammate Rob Burrow, who also passed away from MND in June last year, took time out from his fundraising challenge to meet with Kyle's family. Sinfield is running seven ultramarathons across the UK to raise money for MND research and awareness. He aims to raise 777,777, a tribute to Burrow's shirt number seven, to add to the 10 million he has already raised for the cause.

In a statement following Kyles death, his family expressed their heartache: "Kyle fought with everything he had, but in the end, it became too much. We are heartbroken. Kyle, we will miss you more than words can express and love you always."

What is MND?

Motor neurone disease (MND) is a condition that affects the nerves in the brain and spinal cord, leading to the progressive weakening and stiffening of muscles. Over time, it can impact a person's ability to walk, talk, eat, and breathe. MND is relatively rare, with the majority of cases being diagnosed in people over 50. It is estimated that 1 in 300 people will develop MND during their lifetime, and approximately 5,000 adults in the UK are living with the condition at any given time.

Author: Ethan Caldwell