Joshua Jessop is a wonderful young man. Each day, the Year 7 student comes to Richmond School with a smile on his face, enjoys being with his friends and gives 100% to his lessons. His enthusiasm and determination are tremendous and an inspiration to us all, given that Joshua suffers with Duchenne Muscular Dystrophy (DMD), a life-limiting genetic muscle-wasting condition, for which there is no cure.
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 are hoping to create a ground-floor, wheelchair-accessible, adapted bedroom and bathroom which is going to cost £60,000.
Karen Jessop, Joshua’s mum, has set up a justgiving page to help raise the money for the project which will make a huge difference to Joshua over the coming years. You can help by donating at https://www.justgiving.com/crowdfunding/joshuas-bedroom-build.
Karen said: “Joshua was originally one of our foster children. He was diagnosed with DMD aged just 21 months. 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, 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 total build cost for the extension will be in the region of £60k and hopefully we can get some assistance through the council but it will still leave a massive shortfall which is why we’ve tried to set a target of £20k to reach by the New Year. 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. Please do keep in touch with Joshua’s journey by following our facebook page at https://www.facebook.com/joshuasjourney4life .”
Jenna Potter, Headteacher, said: “Throughout a hugely challenging first two months at school, Joshua has amazed us with his determination and positivity. He has really got ‘stuck in’ to life at secondary school and has involved himself fully – always with a smile on his face. Joshua is a genuine role model for the other students across the school and college- his resilience and positive approach are exceptional!”
Joshua’s family receive support from Duchenne UK who have recently supplied Joshua with steroid dependent wristbands. Joshua takes a daily dose of steroids and the wristband is designed to alert people that the wearer is steroid dependent and may need to be given extra steroids if they become unwell, sharing the link to the Duchenne Emergency website that will allow healthcare professionals to access information immediately relevant to DMD.
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 www.duchenneuk.org/
Duchenne Muscular Dystrophy (DMD) 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 affect 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. It is classified as a rare disease.