Even just over the past year, Benjamin has lost a lot of mobility. Just walking short distances without support is a huge challenge for him. As he has grown, his muscles have been so tight that they have not been able to keep up with his growth, causing more leg length discrepancy (his left leg is quite a bit shorter than his right), and less ability to move his left leg and arm. Even with support, Ben has a hard time walking very far, and has been relying more and more on his wheelchair.
In order to improve Ben's quality of life and allow him to run and play more freely, he needs a surgery called Selective Dorsal Rhizotomy. This surgery will release the spasticity, allowing Ben to move more freely. It is done at St. Louis Children's Hospital by a highly skilled and successful surgeon, Dr. T. S. Park. This doctor has a 100% success rate in eliminating spasticity, and has only encountered 2 very minor and easily repaired complications out of the thousands of patients he has operated on.
Unfortunately, in Ontario, the only surgery that was offered to help Ben is a very barbaric orthopaedic surgery. They wanted to rotate his left hip, break his femur to turn his foot out more, and surgically stretch and thin out 3 muscles and tendons in his left leg. This would be followed by 3 months of in-patient care at a hospital, in which his mobility would be very limited. Also, if that weren't bad enough, this surgery would very likely have to be repeated in future.
Within Canada, there are two hospitals that offer variations on SDR surgery. One is in Montreal, the other in Vancouver. However, these surgeons both remove a fairly large section of vertebrae, leaving more room for complications such as scoliosis. They also do not cut as many rootlets, which leaves some spasticity, which of course defeats the purpose.
Without spasticity, Ben will be able to walk with more ease, not have to rely on his wheelchair, not have to get Botox injections in his muscles, and will be able to learn new skills. He will be able to learn how to dress himself, get in and out of the bath tub, climb stairs...all of the things that many of us take for granted. And he will be able to focus more on being a kid.
You see, Ben absolutely LOVES baseball, and being able to actually run the bases and catch the ball like his idols, the Toronto Blue Jays, is his dream. We want to give him the best chance possible to achieve that dream.
This SDR surgery, followed by intense physical therapy, will give Ben a chance to play baseball. And to just play. And to walk and move without pain. He is already 8 years old though, and to ensure it is most effective, we need to make this happen as soon as possible. The older he gets, the less effective it will be.
Ben has had many challenges in his short life. We adopted him when he was 5 years old, and we are his fourth (and final) family. He also lives with Epilepsy, which throws a curve ball for him once in a while. He has a great passion for life though, and hasn't let anything change that!
Please donate, and help Ben run those bases!
**In answer to some questions we have received, the cost of the surgery itself is about $55,000. Other costs include a month long hotel stay in St. Louis, food, and travel while we are there. Also, when we return home, we will need to hire a private physio therapist to work with Ben at least 4 days per week. Hence the $100,000 we are trying to raise. Thank you for supporting Ben!!