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Oscar Edwards & Daniel Heard
BBC News
Kyle Sieniawski was identified with motor neurone illness on the age of 13
The household of a boy dwelling with motor neurone illness have stated it was a “massive shock” for him to be identified on the age of 13.
Kyle Sieniawski, from Pontypridd, Rhondda Cynon Taf, began to lose mobility in his left arm final yr earlier than experiencing different neurological signs.
Almost a yr after she first seen the signs, Kyle’s mum advised BBC Radio Wales Breakfast that his situations had deteriorated to some extent the place he can not feed himself.
Motor neurone illness is an unusual situation that primarily impacts folks of their 60s and 70s.
Kyle was identified with MND on 17 January – virtually a yr after his mum Melanie first seen signs.
“He wasn’t walking straight and was using one arm to support the other,” she stated.
Kyle was initially taken to the Royal Glamorgan Hospital in Rhondda Cynon Taf for exams adopted by an MRI scan.
Doctors initially thought he had enterovirus which is an an infection that may trigger sickness in infants, youngsters, and teenagers.
Family photograph
Kyle’s household have began a fundraising web page to lift consciousness about MND
But his household grew to become involved when his situation started to deteriorate additional.
“In October his right arm started to become a bit shaky. By November he was struggling to walk up the stairs,” his mum stated.
Kyle’s aunt Heather thought it was MND after researching the signs, however it nonetheless got here as a “massive shock”.
“With the tears that have been spilled the last few months it’s been like a river,” stated Heather.
Family photograph
Kyle makes use of a VR headset to observe movies and play video games along with his older brother because it doesn’t require his arms
Kyle wants assist when consuming and strolling and has spent the previous few weeks at Noah’s Ark Children’s Hospital in Cardiff.
Heather stated it was “unbelievable” he was so cheerful, which was having a constructive impression on the remainder of the household.
“I don’t think a lot of children would react in the same way. He is an inspiration,” she stated.
The teenager spends his time enjoying video games along with his household together with Connect Four, and has a VR headset that enables him to observe movies hands-free.
Family photograph
Kyle loves a sport of Connect Four, however wants assist with the counters as his arms have restricted mobility
His household stated they felt “really positive” after discussions had been held a couple of medical trial which might decelerate the illness.
But they had been left “devastated” after it was placed on pause.
The household stated they felt there was “no hope” with out the trial, based on Heather.
“It will make a difference. I’m hoping because he is so young he has the energy to fight it,” she added.
Heather stated the response from the neighborhood had been “absolutely outstanding” with folks establishing fundraisers “left, right and centre”.
“One lady even offered a luxury caravan the family can use to spend some time with Kyle. It’s been amazing. I can’t get over it,” she stated.
What is MND?
MND is a comparatively uncommon situation which is most typical in folks over 50, however adults of any age could be affected.
An individual’s lifetime threat of creating MND is one in 300, based on the MND Association.
MND impacts as much as 5,000 adults within the UK at anyone time.
An individual’s lifetime threat of creating it’s one in 300.
Source: NHS
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