My name is Shannon Osborne. I’m the extremely proud mother of Ethan, the handsome young man in this photo above. For several years many of you have followed our journey, offering encouragement, support, and help along the way. Unfortunately, Ethan’s pain has returned with a vengeance. We are scheduled for another trip to Delaware for two back procedures and we are unsure how long he will be down. The plan is for his surgical team to remove as much infection and possibly all of his surgical hardware. Post-surgery he will be treated with high-powered antibiotics and will have a vacuum-sealed cover enveloping the surgical opening in his back so that they can attempt another round of treatment without having reopen several days later. This is extremely frightening but we are hopeful that this gives Ethan the best possible chance for getting his life back. As some of you may know I have battled illness of my own these past several months and just had surgery. I’m asking for help to cover airfare, accommodations, meals, as well as lost income. We have made it through with one income but Cliff will have to accompany us as Ethan and I will be under several restrictions while we travel to Delaware to battle his infection. For those of you that are new to our ‘roller coaster’ journey please fasten your seat belts and allow me to include a little background. Ethan is 21 years old and was born with Achondroplasia, a form of dwarfism. Living with Achondroplasia is so much more than just overcoming and adapting to short stature. Many live a life filled with medical and health issues. Ethan is certainly no stranger, as he had lived the majority of his life in pain, overcoming countless surgeries and medical challenges. Ethan’s high school experience was abruptly stopped when he began the 1st of what will soon be his 5th back surgery since 2018. In 2018 Ethan had an unsuccessful multi-level laminectomy(L1-L5) at Shriners in Shreveport to address severe spinal stenosis. Unwilling to accept that my son would live in chronic pain I sought out help from Dr William Mackenzie, the top orthopedic doctor for those with skeletal dysplasia. After numerous CT’s, MRI’s etc we had a plan of action and Ethan underwent spinal fusion (T10-L5) and decompression surgery the following year at Nemours DuPont Children’s Hospital in Wilmington, Delaware. Unfortunately, this 2019 surgery failed to provide relief and he soon found himself in even more pain. We know now that this surgery was unsuccessful because of a rare bacterial infection called C. Acne’s. This infection, unbeknownst to us all, had been living on the hardware in Ethan’s spine and remained undiscovered after one week after his 4th back surgery in September of ‘22. This infection is extremely resistant to antibiotics and has prevented Ethan’s spine from completely healing. As I mentioned, it has been a roller coaster so please allow me to rewind to explain how we have arrived here. After numerous injections and rounds of physical therapy, we found ourselves desperate and reached out to UAMS. In 2024 they put in a spinal stimulator to help reduce Ethan’s relentless back pain. This, unfortunately, didn’t even begin to touch his pain. At the end of our rope, we reached back out to several doctors, including Dr Mackenzie in early 2024 praying for some form of hope. They discovered from a 2024 CT that his screws were backing out of the hardware at L5. We were thankful for an explanation but devastated at the thought of a 4th back surgery. This nearly 12 hour surgery involved partial fusion, replacement hardware, removal of his spinal stimulator, and cutting through his abdomen to insert anterior support to his vertebrae. All Ethan wants is a chance to live a life without severe pain. He dreams of having a job and having a normal life. This momma’s heart nearly broke as I watched his friends move off to college as he was forced to earn his high school diploma from a hospital bed or homebound while rehabilitating from his several surgeries. I sometimes struggle to remain strong and positive seeing my child suffer through severe pain yet Ethan continues to meet each challenge head on with unwavering faith and determination as he battles to regain his independence. Despite Ethan’s 2019 surgery never completely healing and his struggle with unrelenting back pain, he was able to save and purchase a car entirely on his own! He’s even searched and found a job with one of Cliff’s good friends only to be told by SSI that he would lose his benefits and jeopardize his insurance. After recovering from the marathon surgery in Sept 2024 we had a short glimpse of hope as he finally was able to manage his pain. I use the term manage because he will always live with some degree of pain. We had already received the heartbreaking news that he had a rare bacterial infection and it was only a matter of when, not if, his pain would return and he’d have to undergo surgery to remove infection and repair/remove infected hardware. We had no idea how long we had but we were thankful for any amount of time without the pain. We were so excited as he was able to get completely off pain meds. He even drove the family to St Louis for a Cardinals game and started to apply for jobs. Just a few weeks ago the results from his bone scan indicated this surgery would need to happen much sooner than we had hoped. We have been extremely grateful for all your support and help given in the past. As hard as it is for me to ask others for help (just ask my husband) I find myself at a loss and am asking for it again. The doctors have hope from his CT’s etc and are confident that if we can get rid of this stubborn infection he should completely heal. Pray that he can find relief and begin another journey towards freedom and getting his life back.
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