Rally for Ethan's Critical Surgery Fund

Update and Praise Report!!!

When people say No, God says YES!!!!

When I made an appointment for Ethan down at the Paley Institute, back in December 2024, I was completely stepping out on faith.

I knew Dr. Feldman did not take Ethan's insurance, but I was determined to get my son the help he needed, trusting God in the process. After our visit on February 6th, there was no doubt in my momma heart, that this was where Ethan needed to be. For the first time, in a long time, we felt REAL hope.There was no question that this was going to be the end to Ethans tragic journey. I was on a mission!! With the help of our insurance broker, and now friend, Tommy Overton, we would encounter roadblock after roadblock.

There were extreme highs, only to be followed by extreme lows, as we navigated through the process. It soon became clear that there was no way for Dr. Feldman to do this surgery, as we would be out of pocket 100%. Fortunately enough, there were two doctors at Paley, and part of Feldmans "Dream Team", that did take Ethan's Medicare. We were ecstatic! This would leave us responsible for 20% of everything, but again, I knew in my heart it was going to work out.

1 Thessalonians 5:17

"Always be joyful and never stop praying." Never stop praying even when you're weary, disappointed, and disillusioned. Never stop praying even when your words have grown brittle and cold from years of praying. No matter what, keep praying.”

During this time, I was writing letters to every major radio and news station, Governor Sanders, French Hill, and even Trump. I had also reached out to multiple churches to ask for prayer and had friends stepping in to help set up fundraisers. I was literally putting in 8+ hour days. Tommy and I had checked into a United Healthcare Medicare Advantage plan for Ethan, but I kept getting told that the orthopedic doctor did not accept it. I reached out to the neurosurgeons administrative assistant and learned that he did take Medicare advantage. Score, that's 1!!

| then called St. Mary's Medical Center and learned that they accepted it as well. Score, that's 2!! At that time, I did not know that it was all or nothing. You see, all of them would have to accept it in order for him to get on this plan, and I was being told that the orthopedic doctor did not. This was a devastating blow, but again I wouldn't give up. Last Tuesday I reached out, playing dumb, and asked if he took Medicare advantage plans. I quickly was told no, only to get an email 30 minutes later saying that he did, but it had to be United Healthcare. I literally fell to my knees. Praise God!! We now have everyone taking Medicare Advantage!!! The next hurdle was open enrollment, which is in October, and was way too long to ask my son to wait.

There are certain criteria to get enrolled sooner, and Ethan fell under that criteria, and his membership now starts April 1st!! Look at God!!!! Now, instead of 20% out of pocket, the max may be $15,000. We will still incur other expenses, as my husband will be off work for at least 2 weeks, and Ethan and I will have to stay in Florida after surgery for 1-2 month's for his rehab. We will be staying at the Molly House, which is 30-40 minutes away from the hospital.

We are flying Ethan down, and Cliff and I will drive and pick him up at the airport, so we will have his medical equipment and a car. We are hoping to get a grant to help cover our stay, as $40 a night can really add up. We are significantly dropping our goal amount, as God has worked out, what we thought was the impossible❤️

I have been meaning to update for the past few days, but my mind and body were completely worn out. I have taken this week to be kind to myself, and rest. If you get anything out of this update, get this, DON'T STOP PRAYING!!!! Keep praying when you don't see His hand. Keep praying when the miracle seems impossible. Jesus is at work, I promise you. But even if we never see the answers to our prayers this side of heaven, God is still working. We become more aware of His faithful presence, and He changes us to be more like Him. Don’t give up!!

To every family member, friend, and stranger, who prayed for my Ethan, sent messages of encouragement and support, stepped in to help fundraise, or generously gave, THANK YOU. Thank you for the incredible impact you have had on our lives. Thank you for helping this momma keep her head up, and get through one of the toughest times of my life. God knew I needed an army, and He sent one. A huge THANK YOU and SHOUT OUT to Tommy Overton, at the Overton Agency, for all the many hours of hard work and dedication he poured into helping make all of this happen. I could not have done all this without him. Above all, THANK YOU God!! Thank you for answering my desperate pleas. I am so undeserving, yet you never forsake me. You ARE my best friend ❤️

I love you Lord.

Continue to follow for more updates, and please , please, keep praying for my Ethan. God is doing something HUGE. Don’t miss out❤️

Story:

Good morning!! My name is Mary Hoskins and I’m reaching out to gather support for my friend Shannon Osborne and her amazing son Ethan! This is a plea for help for Ethan. I am desperately trying to bring awareness to their cause, but hopefully also to increase the number of prayers that her son needs. Ethan is 23 years old and has Achondroplasia, dwarfism. He has had 7 failed back surgeries and is in desperate need of another one. They need to raise the 20% that his Medicare will not cover!! Shannon is a desperate momma that will do anything for her son. Below is her story. Take a bathroom break, get a cup of coffee, and get comfortable; it’s a long journey. Please take time to read what this precious family has been through!

“Ethan is 23 years old and was born with Achondroplasia, dwarfism. Three days after delivering Ethan, it was confirmed that he had this type of dwarfism, leaving us with so many questions and uncertainty of his future. In my mind, dwarfism just meant a life of adaptations and lots and lots of stools. I had no idea that it came with a life of extreme pain, medical complications, and unlimited obstacles. Ethan has had numerous surgeries, starting with his first at only four weeks old. I literally fought to keep him alive for the first four years of his life, almost losing him several times, he was just so sick. Ethan has had double leg surgery, to correct the severe bowing, stomach surgery, knee surgery, tonsillectomy, adenoids removed 2x’s, and four sets of T-Tubes, which eventually led to Ethans hearing loss, causing him to get hearing aids at the age of 16. Ethan has also had seven major back surgeries, ranging from 2018-2024. Unfortunately, my son’s tragic journey is still not over, and continues to this day!

Let me back up to 2018, the year that would change Ethans life forever. At 16 years old, Ethan was having severe lower back pain, that eventually led to him losing feeling in both legs, causing him to fall. Ethan had to leave school in 10th grade and would be homebound for the rest of his high school years, never setting foot back on his campus with his friends again. We live in Arkansas, and there are no skeletal dysplasia doctors here in our state. Due to the rarity of Ethan‘s condition and his anatomy, there are no doctors familiar enough to perform complex surgeries on him, leading us to go outside of our state. Ethan had his first back surgery at the Shriners Hospital in Shreveport, Louisiana, which was a multilevel laminectomy from L1 to L5, with a fusion using his own bone. We were extremely hopeful that this would relieve Ethan‘s pain and give him a better quality of life, but it only left him in worse condition. On our fourth visit after Ethan‘s surgery, with him still feeling no better and his pain getting worse, the doctor literally looked at my son and told him he would more than likely live with that pain for the rest of his life. Not only would I not accept what he said, but I would not allow my son to either. We are very faith driven people, and I could not believe a doctor was telling us there was no hope. Without hope, what do you have? Literally the next day, I was on the phone with our geneticist that was out of Madison, Wisconsin, asking for the top skeletal dysplasia doctor in the United States. Unfortunately, there are very few and they are scattered all over the US, and they do not take out of state Medicaid! With a lot of persistence, tons of telephone calls and letters written, Ethan was able to see Dr. MacKenzie at Nemours Hospital in Wilmington, DE, with his Arkansas Medicaid. We were not out a single penny!!! It was a true blessing and what we thought, would be an answer to our prayers. In 2019, Ethan underwent a spinal fusion with rods and screws from T10 to L5, with more decompression. Dr. Mackenzie said Ethan’s spine was like a suspension bridge without the suspension. It was left unsupported and that’s why he was in so much pain following his surgery at the Shriners. Once again, we were extremely hopeful and just knew that this surgery would be the end to Ethan‘s relentless pain. Very shortly after, things again seemed to take a turn for the worse. We were left confused, not knowing what to do next. We had reached back out to Nemours, but they felt like there was nothing more that could be done for Ethan at that time. Ethan‘s pain continued to get worse and worse, making it where he hardly ever left the house. Ethan was under the care of pain management and they tried everything from hydrocodone, oxycodone, fentanyl patches to methadone. Most of these made my son extremely sick and lifeless. Determined to find him pain relief, and to get him off narcotics, in 2020, we went to see a well-known neurosurgeon here in Arkansas at UAMS Hospital to talk about a pain pump. At our visit, she was insistent that a spine stimulator would help Ethan, even though he did not have a lot of nerve pain. Ethan went through the trial, with no improvement, but they continued to push for him to do it, saying that with time, it would give him great pain relief. Weeks later, Ethan would return back to the hospital to have the spine stimulator permanently implanted. Over the course of months, Ethan would be shocked by the device, and it did absolutely nothing for his pain. Come to find out from his current pain management team, not only was it not placed correctly in Ethans spine, but it never would’ve helped with his type of pain anyways. I was not able to be there for the surgery because it was 2020 and there were strict rules in place. I later found out from Ethan , that after the procedure, the doctor came to him asking if she could use him in a medical journal because he was her first patient with Achondroplasia that she had ever performed a procedure on. Nevro was the company of the device used, which we also learned she traveled the US speaking on behalf of. I definitely feel there was a push for my son to get this device for her own notoriety. Continuing to be in pain and under pain management, Ethan started on Dilaudid orally. Desperate to find my son help, in 2021, I reached out to a phenomenal surgeon at the Paley institute in West Palm Beach, Florida, Dr. Feldman. He immediately ordered for Ethan to have a MRI of his entire spine. After our zoom call with Dr. Feldman, we learned that Ethans screws were backing out at L5. He immediately needed surgery. We so desperately wanted to have the surgery done with Dr. Feldman, but he did not take Ethan‘s Medicaid and we were going to be out of pocket. The surgery was $10,000 upfront with the remaining $166,540.85 due, two weeks prior to surgery. Feeling hopeless and shattered, I reached back out to Nemours, sending them all the imaging, and they quickly set up surgery. In September of 2022, Ethan had an anterior L4 – L5 disectomy and instrumentation with a titanium mesh cage and screw fixation, revision of the posterior L5 pedical screw fixation, and revision of the L4 – L5 pseudoarthrosis. A mouthful, I know. The neurosurgeon was also able to remove the spine stimulator. Due to Ethan‘s many failed back surgeries, they also performed several cultures in the deep tissue of the spine. Six days later, as we were sitting at the Ronald McDonald house packing up to leave the very next day to come home, we received a phone call from the doctor. Ethan’s cultures had come back positive for a rare bacterial infection, Cutibacterium Acnes. It’s a very wimpy but resilient bacteria that is almost impossible to detect, and get rid of. You show no signs of fever, and it rarely shows up on bloodwork. It can be killed off in the tissue, but it thrives on metal forming a biofilm. It eventually causes the hardware to fail and screws to back out, leading us to believe Ethan had had this for years. Even though the surgery was a success, it wasn’t a matter of if, it was when the infection would cause Ethan extreme pain again and wreck havoc on his hardware pushing out the screws. We were heartbroken to say the least. Ethan was placed on 3000mg of Kflex antibiotics a day, for 6 months, and had to start seeing an infectious disease doctor. Having this knowledge, Ethan surprisingly was doing well after this surgery and was starting to live life. Literally six months to the day, he started having extreme pain, causing us to wind up in the ER. A CT and a bone scan would reveal that Ethan‘s infection was in fact wrecking havoc on his hardware again. On August 29, 2023, Dr. Mackenzie removed all of Ethan‘s hardware from T10 to L5. He then performed an antibacterial wash and placed a wound VAC in for three days. On September 1, Ethan went back to the OR to remove the wound VAC, do another antibacterial wash, and have antibacterial beads placed along his spine. They even took part of Ethan‘s bone at T11 and placed it at L5 for more support. The CT showed that Ethan‘s spine was strong enough to go without the hardware so they left it out. They placed him back on 3000 mg of Kflex for three more months. Ethan never did good after this surgery. He had lost a lot of blood and became extremely anemic. He also never walked the same and continued to be in a lot of pain. His pain had significantly gotten worse in February 2024, where imaging showed that Ethan had broke through his own fusion mass at L1 – L2 and that he had an overgrowth of bone at L5 on the left that was rubbing on his pelvis, causing extreme pain. My son literally had a broken back. On March 18, 2024, Dr. Mackenzie performed another spinal fusion with rods and screws from T12 to L4, also shaving off the extra bone growth that was causing Ethan pain. They also took more cultures from Ethan’s tissue and where the spine had broke to test for cutiebacterium acnes. After 12 days, it remained negative. Ethan was to remain on 3000 mg of Kflex for another six months and continue to follow up with infectious disease.

For the first time in years, Ethan felt good and was doing well. He was literally up doing laps around the halls the day after surgery 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 being at the mall helping Ethan shop for clothes for his new job when the pain returned. I remember the look in his eyes as tears weld up, asking me why. I was so angry and frustrated. The pain not letting up, Ethan had to call his new employer and tell him he would not be able to work. He was heartbroken. We had more imaging done and we sent it to Nemours where they could not find anything wrong. Everyone felt that it was more than likely the infection again, so I got him an appointment at Johns Hopkins in Baltimore. Dr. Ladd was amazing, but there was no sure way of telling whether this was the infection or not. He said that Ethan should’ve always had a picc line with IV anabiotic‘s following his surgeries. He said it was more than likely too late, but it was worth a shot for Ethan to try, so I got on the phone with his infectious disease doctor back home, and we set up for a picc line to be put in place. While we were up there being so close to Nemours, I reached out and asked if Ethan could be seen. This was probably one of the hardest days of my life as a mother as I literally watched two surgeons shake my son‘s hand and tell him they were sorry, and there was nothing more that could be done for him. I literally broke down as my son held it together for me. He has always been so strong, never doubting Gods plan and purpose for his life. When we return back home, I was desperate to find my boy help. Again, I was never going to accept that my son was going to live at this level of pain for the rest of his life. I will travel to the end of this earth to get him the help he needs. Once again, I reach back out to the Paley Institute, to see if Ethan could see Dr. Feldman. After two long, anxious months, we finally got to visit with him on February 6th of this year. We left that visit resonating on two words he kept repeating. Hope and fixable. Everyone had given up on my son, but this man says he can help him. Again, we were faced with the same challenges as before. Ethan has Medicaid, but has had Medicare for three years, and he takes neither. When we got back home, I immediately sought out an insurance broker to see what our options were. We tried to get Ethan on the marketplace, but it is illegal to have if you are on Medicare. In my mind, since Medicare seemed to be the roadblock, it just made sense to get rid of it. We contacted Medicare and even went down to the Social Security office, and we were advised that we could drop Ethan‘s Medicare, but he would have to pay back the three years of premiums, he would lose his SSI/SSDI monthly and he would be penalized if he ever was to get back on Medicare. It’s like someone came and knocked the wind right out of me. Here we have a doctor that says they can help my son, but insurance is standing in the way. I have already contacted our congressman‘s office French Hill, because I just cannot understand why Ethan would be penalized. I understand there are laws, but my son literally has less than 10 specialist in the whole United States that can see him. It’s just very disheartening, but I will not give up. I would do anything to give him a chance at a life. Ethan has watched all his classmates go onto college, get jobs, get married, and even start families. He feels like his life is passing him by. Don’t get me wrong. My son is one of the most positive inspiring people you could ever meet. He could walk in a room and you would never know that he lives at the level of pain that he does. He continuously has a smile on his face and speaks nothing but positivity and hope. He brings joy to everyone he meets, but above all, he loves the Lord. Ethan’s faith in God is enormous and infallible. Some days are extremely hard on him mentally, but he always says, God’s got a plan! He is my hero and I truly appreciate your time and donation! God Bless ❤️”

(Source: Shannon Osborne)