Foster parents Karen and Alan Jessop, who have cared for 42 children over the last ten years, have launched the next step in a campaign to raise awareness and funds for their 12-year-old adopted son Joshua, who was diagnosed with terminal Duchenne Muscular Dystrophy (DMD) when he was just 21 months old.
Mrs Jessop said: "It’s a muscle-wasting disease. He gets very very tired. He gets muscle cramps. He has heart and lung issues."
Despite living with the life-limiting genetic muscle-wasting condition, the Year 7 student each day goes to Richmond School, a community comprehensive on the edge of the Yorkshire Dales, with a smile on his face.
Jenna Potter, Headteacher for Richmond School, said: "Throughout a hugely challenging first two months at school, Joshua has amazed us with his determination and positivity.
"He has really got stuck into life at secondary school and has involved himself fully - always with a smile on his face."
Sadly over time, Joshua’s health will deteriorate and he will increasingly become more reliant on others and machines to do everything for him.
To help Joshua be as independent for as long as possible, his parents, who also care for their adopted younger boys Ryan, and Logan, and girl Summer-Jane, aim to create an adapted Superman-themed bedroom and bathroom on the ground-floor with wheelchair-accessible.
Mrs Jessop said: "We decided to adopt him to be able to give him as many magical memories as possible for the time he has left.
"It is so important that Joshua has the opportunity to lead as full a life as possible for as long as possible as for the time he has left.
"Over time, his health will deteriorate and he will need more and more assistance.
"He would really like a Superman themed bedroom and we sincerely hope that with the support of the general public we may be able to make his dream come true."
The family estimated the total build cost for the extension will be in the region of £60k and are hoping to receive some assistance from the council.
Mrs Jessop has set up a justgiving page to help raise the money for the project, and is appealing to the public for support, with the aim to make a huge difference to Joshua over the coming years.
She said: "We realise that things are particularly difficult for everyone at this time and value the support of the local community no matter how small, let's hope we have plenty of acorns donated to allow the oak to grow.
"We are also hoping there could be a budding artist who may be able to offer some help with decorating the murals on the walls, any donation of time would also be very welcome."
Mrs Potter, who has been in the post since January 2018, added: "Joshua is a genuine role model for the other students across the school and college- his resilience and positive approach are exceptional!"
To donate visit the justgiving page here.
Duchenne Muscular Dystrophy (DMD)
It is a genetic disease that causes muscle weakness and wasting.
Children born with DMD have a fault, known as a mutation, on their dystrophin gene. For people with DMD, the fault on the gene means that they cannot produce dystrophin, which is a protein that protects muscles.
Without dystrophin, muscles get damaged more easily and so muscle strength and function is weakened.
DMD almost always affects boys, and they tend to be diagnosed before the age of 5. Classified as a rare disease, there are around 2,500 patients in the UK and an
estimated 300,000 worldwide.
To find out more about DMD and how you can help Duchenne UK continue to support those families impacted by the condition and to carry out further research to find a cure visit here.
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