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 yearâs 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 Stanleyâs pram behind when they go for short breaks at Little Bridge House, as they canât fit it in the car along with everything else he needs.
Stanleyâs mum, Emma Murphy says:
âThe people who make these decisions havenât 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 canât get this help is not right. There are lots of children with short lives and you donât have time on your side. We want to give him the quality of life that he deserves when heâs with us.
âHaving a specially adapted vehicle would mean we can wheel him straight into the car and secure him without having to moving him â which generally causes a seizure â 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 donât understand how something like this be so black and white.
âIt 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.â
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