Stanley’s story

Stanley’s story

Stanley Murphy is two years old and has Tay Sachs. He has no muscle tone and cannot move or support his head. He often has seizures and may not live to three year’s old. His rare condition means he cannot move and must lie horizontally, yet his mum and dad have been told he must be three to get funding for a specially adapted car. The family have to leave Stanley’s pram behind when they go for short breaks at Little Bridge House, as they can’t fit it in the car along with everything else he needs.

Stanley’s mum, Emma Murphy says:

“The people who make these decisions haven’t a clue what life is really like. To get this mobility element of DLA a child is supposed to be three years old. Stanley might not live until he is three years old. To be told he can’t get this help is not right. There are lots of children with short lives and you don’t have time on your side. We want to give him the quality of life that he deserves when he’s with us.

“Having a specially adapted vehicle would mean we can wheel him straight into the car and secure him without having to moving him – which generally causes a seizure – into a car seat buy nolvadex online shop that really is not suitable.

“We are having real trouble finding a car seat that suits him even with the help of his Occupational Therapist. I have spoken to someone at the DLA and asked if there is any way, because of our circumstances, that we could access this help any sooner. The answer was a definite no. I don’t understand how something like this be so black and white.

“It would benefit Stanley no end, he would be comfortable, which is everything to us, and we would be able to get out and about more. I am left feeling so upset and disappointed.”

 

Spotlight on StanleyTogether for Short Lives is at Westminster today meeting with MPs and Lords to set up a Parliamentary Group on children who need palliative care. One of the specific things we’d like to see is the Chancellor lifting the unfair baby benefit mobility bar for the 0-3s so families with seriously ill babies and young children can safely transport their child and the life-sustaining equipment they depend on.

Watch Stanley’s story below, and then find out more about the impact on Stanley’s life and how you can get support our campaign on our website here: http://www.togetherforshortlives.org.uk/families/family_stories/10852_stanleys_story

Posted by Together for Short Lives on Tuesday, February 7, 2017

Daniel is the father of a little girl called Amelie who was diagnosed with Tay-Sachs in March 2011 when she was 15 months old. After slowly coming to terms with what the future held, Daniel, his wife Patricia and their friends started THE CATS FOUNDATION to raise awareness of the disease and to provide fund raising opportunities so that a potential treatment can be found.

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