I’d like to share my tribute in the Senedd today to Kyle Sieniawski from Pontypridd who tragically passed away at the end of November at fourteen years of age, having received the devastating diagnosis of Motor Neurone Disease earlier this year.
Kyle was a wonderful, caring and inspirational boy that was taken far too soon. Despite the wonderful care he received at hospital, Kyle wanted to come home. His family did everything possible to try and make that happen, even putting their home on the market as it was not suitable for adaptations. Unfortunately, he never got his wish but his family have vowed to continue campaigning in Kyle’s memory to ensure no family has to go through what they did.
The Senedd joined me in sending our deepest condolences to Mark, Melanie, Liam and all of Kyle’s family and friends. He will never be forgotten by all that met him or were touched by his story.
You can also read the full tribute here: https://record.senedd.wales/Plenary/15469#C730876
I will continue to support Kyle’s family and others in pressing the Welsh Government to undertake further work with local authorities to significantly improve pathways and decisions on the availability of adapted homes for people diagnosed with MND and similar health conditions. We need far better response systems for individuals and their families.
The MND Society’s “Unlock the Door Report”: https://www.mndassociation.org/unlockthedoor looks at specific actions including introducing a formal fast-track processes for people with progressive conditions such as motor neurone disease to ensure rapid decision-making and delivery of adaptations, supported by training and education for staff so that fast-tracking is applied consistently and appropriately. This type of response is vital to ensure no other family endures what Kyle and his family had to suffer.
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