Sam Perkins is 38 and was diagnosed with Motor Neurone Disease (‘MND’) last year. He is currently a patient at Nottinghamshire Hospice and also features in a new children’s book designed to raise money as well as informing and educating children about disabilities.
MND is a degenerative condition that affects the nerves in the brain and spinal cord. Over time, it causes the muscles in the body to waste and weaken and can have serious implications for the patient’s ability to walk, talk, breathe and perform other day-to-day functions. Unfortunately, there is no cure, but with the correct management, patients can live for many years.
Sam Perkins discovered he had MND in 2019 and like many, did not know a great deal about his condition upon diagnosis. He receives treatment and support at Nottinghamshire Hospice and was not really aware of the fantastic work they do, which has enabled him to life as full a life as possible. As a result, Sam and his wife established their own charity called Stand Against MND (‘SAM’) to raise money for the hospice and the MND Association.
‘Lily and Sam’ was written and illustrated by Sam’s brother-in-law, Andrew Stonehouse, and Sam’s sister, Victoria. It tells of a little girl and her uncle Sam who needs a wheelchair to get around and a ventilator to breathe. They visit a park one day, but find it is rather run down. They set about cleaning and, with the help of a few friends, including a cat, a dog and a hedgehog fix the whole place up. As Andy Stonehouse comments the story is designed to show children “that it’s normal to have disabilities. You may have to do things in a different way but by working together you can find a way through.
I have not ordered a copy just yet, but it has already sold over 140 copies and is certainly on my list. You can purchase it on Amazon and it certainly looks like a great book with wonderful illustrations.
In any event, it is yet another example of the raising awareness of disability in children’s books and looks well worth a read.