Support Ethan's Journey to Healing

Most of you know me already, but for those of you who don’t, my name is Shannon Osborne, and I am the proud mama of the handsome young man in the pic above, Ethan Osborne, who is 22 years old.

So many of you have been following Ethan's journey since 2018, when he had his very first back surgery at the Shriners in Shreveport, Louisiana. Fast-forward almost 7 years and 6 back surgeries later, including a rare bacterial infection, Cutibacterium Acnes, and Ethan’s journey is unfortunately still not over.

On March 18th of this year, Ethan underwent his 7th back surgery at the Nemours Hospital in Wilmington, Delaware. For the first time in years, he felt good and was doing well. He was literally up doing laps around the halls the very next day without any assistance. Over time, his pain had decreased from a 9/10 down to a 2/3. This was extremely manageable, considering the fact he had lived at such high pain levels his entire life. Ethan was even looking forward to his first job ever, starting out as an intern for a company that installed protection software at pharmacies. He was thrilled at the opportunity and was excited that he would have his very own office. Everything was starting to fall into place for him until September 8th, when everything started to fall apart.

I remember the day vividly. It was a Sunday, and Ethan and I had gone to Park Plaza Mall so he could purchase new clothes for his job he was about to start. We were there no longer than two hours when he looked at me and told me that his pain was back. Not just any pain, but the pain he had felt before when the infection was back. I held back the tears as I walked him to his car, not knowing if he would even be able to drive home. As soon as I sat in my car and closed the door, I broke down. I couldn’t comprehend it. We are very faith-driven people, but I was angry. Why was this continuing to happen to my son? My son, who has never met a stranger, who lights up any room with his enormous smile and positive energy, and who has infallible love for God. Nothing made sense.

As I stated above, Cutibacterium Acnes is a very rare bacterial infection. It is extremely resistant to antibiotics and forms a biofilm on metal, which Ethan has in his spine. Ethan was diagnosed with this six days post-op, after his fourth back surgery in 2022. It has caused three additional surgeries since, and we believe it is back, causing this unimaginable pain.

If you have skeletal dysplasia or a family member who does, you will understand this. Anyone with dwarfism simply cannot go to just anyone for care. Their anatomy is so much more complex, and most doctors are in practice their whole life, never treating a single patient. I admired our Children’s Hospital here in Arkansas when they told me years ago that they would never touch Ethan. They simply did not see it enough. There are very few skeletal dysplasia doctors that are scattered all over the United States. We were always fortunate to go to Nemours in Delaware, where they took Ethan‘s Medicaid and Medicare. Really the only money that we were out was lodging, car rentals/taxi's or ubers, food, and time off work, which was a lot. Due to the complexity of this infection, we simply do not feel comfortable with our I.D. doctor here at UAMS, and as much as we love Nemours, we feel it is time to seek out a second opinion. Like I said, we are forced to go out of state due to the doctors here not knowing about Ethan‘s Achondroplasia, and although some do take his Medicare, they do not take his Medicaid, leaving us responsible for 20%. One of Ethan‘s surgeries alone was over $750,000. We leave next week to have a spine evaluation on November 7, with Dr. Aaron Huser, at the Center for Advanced Medicine, in St. Louis, Missouri, and then Johns Hopkins on November 19, with James Ladd, a top Infectious Disease doctor. Nemours has sent all records and recommendations, and we are blessed to be accepted to one of the top hospitals in the nation.

We have been burdened with enormous out-of-pocket expenses for the remediation due to water damage done to our home recently. We've put our home back together with zero help from insurance. I have experienced a decline in my own health that has caused loss of work, forcing me with the harsh reality that I will likely have to change careers while trying to balance the unrelenting emotional and physical toll each surgery has taken. In short, we are financially strapped and emotionally drained. The threat of losing our home could be a reality. We are literally surviving off the generosity of our parents and credit cards that are pretty much maxed out. I know we have come to you all before, but I am humbly crying out for help. There is no amount too small, and if you cannot give, I plead for your prayers. The mix of emotions of worry, stress, guilt, exhaustion, frustration, and grief are at an all-time high.

Thank you all for taking the time to read our story and follow our journey. The outpouring of love and support we continue to receive is immeasurable. Please, please pray for my family. I don't know where this ends, but I will never give up hope. I will never surrender to the idea of my son suffering and living like this the rest of his life. Our faith is BIGGER!!! Hebrews 13:8 states, God is the same yesterday, today, and tomorrow. Therefore, I know that He is still in the business of healing. Ethan needs a miracle. He needs healing.

God Bless, from the Wekkin/Osborne Family

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