Help free Ben from a life of unimaginable pain

Ben was a confident, healthy energetic boy, with a passion for all sports, especially basketball. He lived life to the max enjoying the Australian dream of being outdoors, biking and playing with his friends. Then a year and a half ago everything changed, he was struck down with an excruciatingly painful illness called CRPS and since then we have lost our happy-go-lucky boy. Our boy has become a shadow of his former self. This has already destroyed 15% of his life. We are determined to reverse this and relieve his pain. The doctors have said that the best place that can now help him is a rehabilitation centre attached to Boston Children's hospital, this will involve an 8-week stay and incur significant medical expense. About our sporty, full-of-life Ben... Our 9-year-old son Ben has been living with an invisible, excruciatingly painful illness for 18 months. Complex Regional Pain Syndrome (CRPS) is a rare neurological dysfunction of the central nervous system and according to the McGill Pain Scale, it is the most painful condition ever recorded. The pain is worse than childbirth and never stops. To put it bluntly, it is often referred to as suicide disease. CRPS is a chronic pain condition that often affects one or more limbs after an injury. The brain fails to shut off the pain response after the injury has healed, which causes pain that is constant, extremely intense, and out of proportion to the original injury. Even the slightest touch from something as light as hair or a rainy drop causes severe pain. What happened to Ben? Following a seemingly innocent rolled ankle, Ben's pain worsened to the point that he was unable to let his foot touch the ground. He couldn't tolerate water touching it, a windy day felt like daggers going into his lower leg. After numerous hospital appointments, X-rays and MRIs, he was diagnosed with CRPS. At night he tries to sleep with his leg hanging off the side of the bed, if he relaxes too much it touches something and he wakes up in agony. Ben gets at most 1 / 2 hours of sleep a night. His activities are extremely limited as any touch, water or wind is unbearable, his foot has not had a shoe or sock on for over a year, and other than when he has been given a general anaesthetic he hasn't been able to wash it. Ben's right leg has wasted away. It changes colour throughout the day and we can see his pain grow to a burning level as his leg becomes a darker colour, and swells. His other leg is doing an excellent job helping with balance and hopping around the house, although bone scans have shown that he is developing osteopenia in both his limbs and his spine. Outside the house, he lives in a wheelchair and regularly closes his eyes and shuts himself away from the world, because he is terrified of anything getting close or touching his leg. Living with the chronic pain of CRPS has affected Ben physically, emotionally, psychologically, educationally and socially. This horrific disease can affect all systems of the body. To the point that Ben has begged both us and doctors to amputate his limb to ease his suffering and told us he 'wants to die'. Throughout the last 18 months, Ben has been in and out of Melbourne's Royal Children's Hospital hospital multiple times every week, the care and support has been excellent; despite Covid causing considerable challenges for the Chronic Pain Team. His only respite in 18 months has been two epidural infusions where the doctors 'took away' the pain & feeling in his legs allowing his fragile body to finally get a rest. Ben has tried a cocktail of different medications to help relieve pain, support depression and aid sleep. This has had a very small effect. His body can somehow take the equivalent of a horse tranquillizer and still not settle into a deep sleep. He endures this level of discomfort and pain all day, every day. We don't know how he manages to carry on with life each day. Why are we fundraising for Ben? Ben is a hilarious, caring, sporty little boy that's desperate to be in his words 'normal' again. As a family, we are longing to see his cheeky smile and be nagged to go and shoot just a few more hoops or to have him play with his friends. He has been attending school part-time desperately trying to retain something social & normal in his routine. By recess, his pain levels are too much as he is exhausted from the anxiety of being near people that may accidentally knock his foot. Despite his only part-time education hours, Ben has managed to keep up with the school work and is loved by his classmates. To help support Ben they (without any suggestion from their teacher) set up a rota to look after him during recess. Like us, they so desperately want to run around with Ben in the playground. He is the most thoughtful little boy, and we are determined to not let CRPS stop him from living a full, active and pain-free life. Working closely with the Royal Children's Hospital, we have exhausted all the treatment options available here in Australia. They have now recommended a specialist CRPS clinic in Boston that can provide a more intensive treatment where Ben will be with several other children fighting this disease, we think of it like a team sport supporting each other. We are expecting this to be approximately 2 months of intensive treatment, perhaps longer. Here is a link to the clinic in Boston: https://www.childrenshospital.org/programs/pediatric-pain-rehabilitation-center Here is a video from the Boston clinic that helps to explain what they do: https://youtu.be/BM20GL_cFm0 Our entire family is desperate to allow our adorable son to regain hope, health and live a pain free life. *** NOTE: Donations will automatically have an optional "Tip" for GoFundMe added to their donation. This is 100% optional and can be removed manually. The amount of this donation can be adjusted down (or up) by scrolling back up to where the donor nominated their donation amount. Please be careful *** Thank you for your support, please help us beat CRPS and save our son. Team Ben xox