A bid to raise funds to buy a specialist wheelchair has been launched to help a Minster teenager.
Foster carer Gemma Hollands has launched the fundraising page to help 18-year-old Jack (surname withheld for personal reasons) and his mums Phil and Rozie.
Jack has congenital myotonic dystrophy which is a degenerative muscle wasting condition.
He also has Neurofibromatosis type 1 (NF1), a genetic condition that causes multiple tumours, respiratory failure requiring a variety of daily medical interventions including nebuliser, deep suctioning of the airway, use of a non-invasive ventilator and cough assist machine.
The youngster has a gastrostomy to help drain his stomach of fluids and air, a jejunostomy to allow medications to be administered directly into the bowel and a central line to allow all nutrition to be administered into a central vein in the heart.
He needs medications administered every two hours throughout the day and night.
Despite the huge challenges, family friend Gemma, 45, says Jack is a happy lad with a ‘zest for life.’
She said: “Jack is the most happy boy. He loves going out for dinner, he can’t eat but loves ordering for everyone. He loves the zoo and he is obsessed with trains. His mums leave messages on his iPad calling out all the train stations to London.”
Phil and Rozie have looked after Jack since he was three-years-old. They also look after two other youngsters with additional needs.
Gemma said: “His mums take him everywhere, he does so much and has the best life. Because he is life-limited and they never know how long they have got they are out with him every day.”
Jack’s condition means he needs 1-1 care 24/7 from his parents and a team of nurses that provide support in the home.
He also requires specialist equipment to enable him to stand and relive pressure from parts of his body from sitting all day.
Gemma is hoping a GoFundMe appeal will raise the £20k-£25k needed to buy a specialist chair which would allow Jack to stand and to be able to get around without hands-on help.
The chair is a mid-wheel drive which gives the opportunity to stand.
Gemma said: “As a manual chair user he cannot currently move around himself. He needs to ask an adult for everything when he wants to move around his home and the community.
“He also requires specialist equipment to enable him to stand and relive pressure from parts of his body from sitting all day. This wheelchair would give him more opportunity to stand alongside his friends when accessing his favourite clubs, activities and family days out.
“This gives him the chance to be at the zoo and have some control over what he goes to look at without relying on his family and care team. The health benefits to him being able to have easy access to changes in position would hopefully help to strengthen his muscles.”
The chair will also help Jack’s parents by allowing them small breaks in the day while the youngster has some independence for the first time.
Jack was able to stand as a youngster but his condition means his muscles have now deteriorated so it is no longer possible unaided.
Sadly, the NHS will not provide the chair following an assessment because of a small risk that Jack is not quick enough to stop the chair if near traffic but Gemma says the model they hope to get also has remote control functions for his parents.
Gemma says the important thing is to give him some independence. She said: “He is missing out on so many things. He never leaves the house on his own because he always needs care but the chair would mean he could wheel himself and be left alone for five minutes – still in view- which is something he has never had.
“Despite everything he never complains, and his mums devote themselves to him and so they need this help as well although they’d never ask and I spent last year talking them around to letting me fundraise.”
Gemma is also organising fundraising events and says she would love it if Jack were able to have the chair by the summer and, if there are any funds over, she hopes to pay for a special day out on the train for the family.
its a pity some of our money starmer seems to enjoy giving away all around the world , couldnt be used to help our own people ? its so wrong how genuine people are just abandoned in this country
Correct me if I’m wrong, but didn’t the NHS provide most if not all the treatments this young man has had?
The NHS formed almost 80 years ago by the Labour Government?
If you read the piece, you will have noticed that “… the NHS will not provide the chair following an assessment because of a small risk that Jack is not quick enough to stop the chair if near traffic”.
It’s a shame that you had to politicize this piece.
Just donated.
Thank you
there is a charity called Skiggle which deals in used equipment ,might be worth chatting to them as well.