Pontypridd boy, 13, diagnosed with condition
BBC News
The family of a boy with motor neuron disease said he was diagnosed at the age of 13 as a “huge shock.”
Kyle Sieniawski of Rhondda Cynon Taf, Pontypridd, began losing fluidity in his left arm last year and then experienced other neurological symptoms.
Kyle’s mom told her that she had noticed symptoms for almost a year for the first time. Welsh Radio Breakfast His condition worsened to the point where he could no longer support himself.
Motor neuronal disease (MND) is most common among adults over the age of 50, and Kyle is considered the youngest in the UK.
Kyle was diagnosed with MND on January 17 – Melanie noticed symptoms for nearly a year for the first time.
“He didn’t go straight, but supported the other with one arm,” she said.
Kyle was initially taken to the Royal Glamorgan Hospital in Rhondda Cynon TAF for testing and then an MRI scan.
The doctor initially thought he Enterovirus This is an infection that can lead to infant, child and adolescent diseases.
But as his condition began to worsen, his family began to worry.
“In October, his right arm began to shake a little. By November, he was trying to walk up the stairs.”
Kyle’s aunt Heather believes the symptoms are MND after the symptoms are studied, but are still “a huge shock.”
“In the past few months, tears have been like a river,” Heather said.
Kyle needs support while eating and walking, and has spent the last few weeks at Noah’s Ark Children’s Hospital in Cardiff.
It was “incredible”, Heather said, and he was so cheerful that it had a positive impact on the rest of the family.
“I think a lot of kids will react the same way. He is an inspiration,” she said.
The teenager spent time playing games with his family, including connecting to four people and had VR headphones that allowed him to watch movies for free.
His family said they felt “very positive” after discussing a clinical trial that could slow down the disease.
But after they stopped, they were “destroyed”.
Heather said the family said they believed there would be no “hope” without a trial.
She added: “It will make a difference. I hope because he is still young, he has the ability to fight it.”
Heather said the community’s response was “absolutely excellent” and people built fundraisers “left, right and center.”
“One lady even offered a luxury caravan so the family could use to spend time with Kyle. It was amazing. I couldn’t get over it,” she said.
What is MND?
MND is a relatively rare condition that is most common among people over 50 years of age, but adults of any age will be affected.
The lifelong risk of a person is one in 300. MND Association.
MND affects up to 5,000 adults in the UK at one time.
A person’s lifelong development risk is one in 300.
Source: NHS