A teenager with a life limiting muscle wasting condition is enjoying the simple pleasures of life that we all take for granted as a portable hoist funded by a charity has given him more movement. AASMA DAY finds out more.
IT’s the simple things in life that often bring the greatest happiness.
For Connor Griffith, 14, the pleasure of having a carpet picnic with his family in the living room is the thing he has enjoyed the most after being given a new lease of life with a portable hoist.
Connor, who lives in Hoghton, near Preston, has Duchenne muscular dystrophy, a life limiting and muscle wasting condition that is slowly stopping him from being able to walk and do things for himself.
Connor uses a powered wheelchair to get around when he is away from the family home and relies on a hoist to move positions.
Connor has the use of a ceiling track hoist when he is at home but when he is out with his family and friends, he relies on someone to lift him which is not very dignified for Connor and puts those lifting him at risk of damaging their backs.
However, thanks to money raised by Newlife Foundation, the largest charity funder of specialist equipment for Children with disabilities and terminal illness in the UK, Connor now has a new hoist and is now able to move around with greater ease.
Mum Alison, 43, who is married to Carl and also has daughter Elisha, three, says the family were devastated when Connor was first diagnosed with muscular dystrophy at the age of five.
Alison explains: “We had a few concerns about Connor but we did not expect to receive the diagnosis of muscular dystrophy.
“Connor was slow walking and had big calf muscles and was clumsy and fell over a lot.
“We were referred to an early development clinic and saw a paediatrician who carried out some tests and then referred us to hospital for blood tests.
“We were heartbroken to be told he had Duchenne muscular dystrophy and doctors told us at the time that Connor’s life expectancy was likely to be his teens.
“However, since then, things have improved a lot and the life expectancy has improved with lads living into their 20s and even 30s.
“We live in hope that research will find a cure or at least a treatment so Connor and other Duchenne suffers can live a longer life.”
Alison says the hardest thing about Connor’s diagnosis was looking at their healthy five-year-old who was running around everywhere knowing that the cruel disease would snatch his abilities away from him.
Alison says: “With muscular dystrophy, children start off fit and healthy and gradually lose the use of their muscles and speech and end up in a wheelchair and will even have to be fed through tubes as the disease worsens.
“Connor is now 14 and uses a motorised wheelchair and we have to hoist him in and out of the bath, dress him and cut his food up for him as he no longer has the strength to cut his own.”
Alison says although Connor had a ceiling track hoist at home to get him from his room to the bathroom and in and out of the bath, he was restricted to sitting on the settee most of the time as it was difficult to move him.
But the portable hoist has opened up a new world for Connor and is easy to fold up so it can be used for days out and holidays.
Alison says: “The portable hoist has made a world of difference to Connor already.
“It is compact so it means we can use it in a hotel if we want to go away as a family, or even in a public toilet while we are out shopping.
“But the best thing for Connor has been being able to sit on the floor – something he hasn’t been able to do because once he’s there we can’t get him back up again.”
l The Newlife Lancashire Fund supports equipment provision for under-19s in the county who are facing any significant disability, whether acquired through birth defect, prematurity, accident or illness.
The website www.newlifecharity.co.uk/lancashire enables local people to find out who needs help in the area right now and highlights the support given to local families.
Newlife has already helped 374 children within Lancashire, with equipment worth £455,497.
But more help is still needed – there are currently 28 children in Lancashire the area who urgently need specialist equipment totalling £29,560.
For more information about the Newlife Lancashire Fund, go to www.newlifecharity.co.uk/lancashire or e-mail: local@newlife charity.co.uk
Alternatively you can call the Newlife County Liaison Team on 01543 431444