THE parents of a teenager with a life limiting condition have praised a North East hospice for helping their son and family find the specialist support they need.
Fraser Carr, 19, from Whickham, has Duchenne Muscular Dystrophy, a severe muscle wasting degenerative condition, which meant he lost the ability to walk when he was 14 and now relies on a powered wheelchair to get around.
Fraser also has significantly reduced strength in his upper body and his heart function and breathing are compromised. He also has difficulties with social communication.
These symptoms can make it difficult for him to take part in every day activities that most 19-year-olds would take for granted.
Now, since attending St Oswald’s, not only is Fraser’s life richer and more exciting, but knowing their son is safe, happy and stimulated has changed mum, Julia and dad, Phil’s lives, too.
They hope by highlighting their story during Hospice Care Week (7-13 October) they will help raise awareness of the vast range of services St Oswald’s Hospice offers.
And that it will encourage families across the region to take part in Elmer’s Great North Parade – the free public art trail currently being held to raise much needed funds for the hospice.
“When Fraser was first diagnosed with Duchenne Muscular Dystrophy, we knew he would reach the stage eventually when he would need hospice care,” said dad, Phil.
“But as soon as we visited St Oswald’s we realised it isn’t at all like we thought hospice care would be. The staff are brilliant, and a lot of fun, too.”
Renowned for providing end of life care, what St Oswald’s has given Fraser is quality of life and the chance to enjoy activities such as music, singing, cookery and crafts that other young people his age enjoy.
There is also a social group just for young adults who access the hospice services and, so far, Fraser has been to a barbecue, afternoon tea, murder mystery evening and even went out on a Catamaran boat earlier this summer.
“These are experiences that don’t happen every day and things that a 19-year-old should be doing,” said Julie.
“And although Fraser gets a lot out of coming to St Oswald’s, so do Phil and I.
Last weekend when Fraser was at the hospice we got to go away on a coastal break and have time together which we don’t often get to do. It’s also nice knowing that we get two undisturbed nights’ sleep a month.
“The hospice has been great for us all. It makes my husband Phil and I better carers because we know we are getting a regular break, all made better knowing that Fraser is comfortable and settled.”
Hospice Care Week is an annual week of activity to help raise the profile of hospice care across the UK and Jane Hogan, Elmer’s Great North Parade project lead at St Oswald’s Hospice, said: “We very much hope that Fraser’s story will help show people that St Oswald’s is a warm, welcoming place with specialist, caring and compassionate expert staff who go above and beyond for our families every day.
“What we offer here is so much more than end of life care which we know is often what most people assume.
“We also support families and, most importantly, help people who have incurable conditions live well, for however long that may be.
“However, as a charity, we heavily rely on voluntary donations and public support,” she added, “which is why we hope as many people as possible will sign up to Elmer’s Great North Parade and help us continue our work for Fraser and other families.”
For more information about Elmer’s Great North Parade visit www.greatnorthelmer.co.uk or follow the trail on Facebook, Twitter and Instagram using the hashtag #greatnorthelmer.