On July 17, 2016 Ryley Hopper suffered a life-changing spinal cord injury.
Recovering from a spinal cord injury is not easy; it takes strong commitment, patience, and money. Even with insurance, there are so many expenses that insurance does not cover including access to specialized therapies, home modifications, durable medical equipment, and caregiver expenses.
July 31, 2018
DCCXXX, HBOT & ADMSC’s
How can this be possible? 2 years? But as I glance at the family calendar hanging by the garage door, July 17th is marked plain as day. Not marked in color with hearts, exclamation points and smileys like the joyful days; birthdays, school plays and graduations, but just the words “2Yr Acci’d Anniv”, just seeing it snaps me back to that fateful Sunday afternoon in 2016. I can’t tell you how many times Kim & I question why we let him go to the pool that day, what if we just said no, or asked him to help us in the yard. It’s a maddening loop of guilt and what-ifs that I don’t think will ever go away. Yet, neither will our motivation and drive to move forward and move forward we have!
It’s been awhile since my last update, so here it goes:
Last August, Ryley headed off to UNCW, with Mom in tow, for his Sophomore (would have been his Junior) year at UNC at Wilmington. The plan was for Kim to setup the support network (caregiver’s, note takers, class transport, etc., etc.) and head back home after a few weeks. Well, things don’t always go according to plan and a few weeks, turned into several weeks, then to months and before you knew it Kim & Ryley had successfully completed two full semesters there. You can let your mind wander a bit and try to imagine your Mom/Wife going back to school with you, living in an on-campus apartment dorm in her latter 40’s. Yep. Kim witnessed things a Mom probably shouldn’t and she put her life on pause to be sure Ryley was good. Not ideal to say the least but a weird thing happened along the way…our relationships and love for one another as a family actually, grew stronger. I’ve heard multiple “you’re my best friend” comments from Ryley to Mom over the past year and I flexed my own softer Mr. Mom side with Colby as she was figuring out her freshman year at NC State and as Will was successfully entering the workforce after graduating from UNCG. Things were going to be okay, no, more than ok, a little different, but we were doing life. Not exactly, how Kim & I imagined our empty nester lifestyle was going to be but life is not a cruise ship.
Fast forward a year later, Ryley and Kim successfully completed Sophomore year, achieving Dean’s List both semesters I might add. Ryley’s fraternity, Kappa Sigma, anointed Kim as “Fraternity Mom” and her picture is front and center on the fraternity chapter composite. Tells you a lot about the character of Ryley’s brothers and the conviction and heart of the lioness, my dear, Kim. There’s probably a few more stories to be told in between, that I probably don’t even know about, but we’ll save that for Old School Part Deux.
Now let’s get to present. The summer started off simple enough with plans for Ryley & Kim to come back home to Raleigh, take some summer classes, do some PT and re-charged their batteries before going back for Ryley’s junior year in August. But as you all have learned so far with the Hopper’s, things don’t ever go exactly as planned. An acquaintance of mine was at a dinner party and made conversation with another gentleman who was involved with hyperbaric oxygen therapy. The conversation continued and the subject of Ryley and spinal cord injury came up…that’s where things started to happen. Long story short, Ryley conducted his 39th treatment (“dive”) today. The results have been astonishing! Ryley has started to do and feel things he hasn’t done or felt in 2 years. My best example of this was a few weeks ago when we asked Ryley if he was feeling any different. “I feel more aware,” Ryley said. “Have you regained any movement in your limbs,” we asked. “I don’t know, I haven’t tried,” replied Ryley. “Well, should we try now,” we questioned? “I guess,” said Ryley. Yep, you guessed right. Ryley looked at his fingers and “asked” them to move…AND THEY DID! Albeit, a small amount of movement but nearly two years post spinal cord injury when all the medical literature says that what you get back after 1-year post injury is the plateau, was like seeing a man step on the moon nearly 49 years ago. Something was happening and it continues to happen. Muscles in his back are beginning to fire and he sits up straighter in his wheelchair, he is also feeling sensations on his stomach and his arms. How is this happening? When you breathe 100 percent oxygen in a special pressurized chamber at 2ATM, oxygen levels in all of your body’s tissues dramatically increase. A study conducted at the University of Pennsylvania School of Medicine revealed that hyperbaric oxygen therapy dramatically increases your internal stem cell activity. Now, maybe when you think of stem cells, you think of the previous ethical and legal controversies surrounding embryonic stem cell research. But stem cells aren’t just found in embryos, nor is their therapeutic use a distant goal, years in the future. Your body, Ryley’s body, is a repository of these amazing, regenerative cells, and our belief is that they are being mobilized and are repairing/rebuilding the damage that was done 2 years ago today. What will be the result after 200 treatments? We are going to find out!
The results have been so dramatic to date we are taking things one step further. Ryley will be receiving intrathecal injections of adipose derived autologous mesenchymal stem cells in August to hopefully supercharge the results we are seeing. Wait, what, Tim? Sorry folks, what I meant to say is that Ryley is going to get some liposuction done on his belly, then a highly trained and sterile technician is going to take his (autologous) fat tissue (adipose) and process it and spin it in a centrifuge until the stem cells (mesenchymal) settle to the bottom. Then, his own stem cells will be injected into his spinal cord (intrathecally) with the hypothesis they migrate and begin to repair/regenerate at his C6 injury level. Okay, that makes more sense to me too. These treatments are experimental, and we are not sure if any recovery will happen, but we have weighed the risks versus rewards and Ryley is going for it!
Ryley will also be undertaking some intensive hands on activity based/locomotor (weight bearing assisted walking) physical therapy combined with continued hyperbaric oxygen therapy to keep the injected stem cells active, happy and working hard on repair. This will be an exhausting & expensive process but we are committed to seeing how far Ryley can go. Because of all this exciting activity, Ryley will be taking a leave of absence from UNCW for the fall semester so he can solely concentrate on his recovery. Insurance doesn’t cover any of these injections given their experimental status and each stem cell injection is $8,000. Assuming the first injection goes well, we are planning for 3 follow-on injections for a total out of pocket cost of $30,000+. The aggressive PT complementing these treatments are yet another additional cost that run about fro $50 to $100 per hour which adds thousands more to the cost. Spinal cord injury rehab is not cheap. According to insurance, Ryley has stabilized and is no longer “sick” and is now lumped into an approved insurance PT protocol that is the same as if you or I had shoulder surgery. 20 visits a year…that’s it and those have already been exhausted. This is why fundraising is so very critical for Ryley’s success and why we continue to utilize the non-profit Help Hope Live for this effort. The great thing about this organization is any of your donations provided here are 100% tax deductible and every dollar goes towards these ever increasing, uncovered medical costs. So very many of you have supported us along this crazy journey and I hope you will consider continuing to do so and if this is your first time visiting, welcome and thanks for your support, it is ALL truly appreciated!
I’d like send my appreciation to those who have made this hyperbaric oxygen therapy and stem cell treatment opportunity a reality. Without the conversation at the dinner party, without the push to try something new, without your vision of what could be possible, this opportunity would not be in front of us. You know who you are and you have been such a blessing in our lives and I thank you from the bottom of my heart for all you have and continue to do for Ryley and my family.
Lastly, for those of you that still haven’t figured out my post title, DCCXXX is 730 in the Roman numeral format…the number of days since the accident, HBOT is the abbreviation for hyperbaric oxygen therapy, and ADMSC’s is the abbreviation for adipose-derived mesenchymal stem cells. Hey, Dan Brown has The Da Vinci Code, I have the Fight4Ry Code. 🙂
Thanks for coming along with us on this crazy, unpredictable journey we call life. Your support means the world to us and it is having a major positive impact on Ryley’s recovery! We love you all! Stay tuned for more great things to come!
#DCCXXX #HBOT #ADMSC’s #StemCells #ParalysisSucks #SCI #CureSCI #GoingForIt #TheFight4Ry
July 23, 2017
An Anniversary To Forget…
As I sit here on the day of Ryley’s accident one year ago, once again our family split with Ryley, Kim & Colby in Atlanta, I look back at all that has occurred and start to look forward to what’s next for my boy. He has come so far in the past year thanks in great part to all of the support you all have provided to him and my family. The physical trauma is behind him, yes there are many physical challenges that are ahead of him but more important is how his mental toughness will be challenged in the years to come. Social media is both a blessing and a curse. Prayers, words of encouragement, financial support, etc. all enhanced by social media. Yet, we live in a society of right here…right now. Beach trips, lake trips, trips around the world all there right on your screen 24/7. I’m not one to be jealous but I do have to tell you I have felt jealously watching families enjoy their summers, enjoying time with their family, the road trips, exotic locations… the spontaneity of being able to just take off that the Hopper’s lost one year ago. Now imagine watching this day in and day out and questioning your future. This has & will continue to be Ryley’s biggest challenge moving forward. Going from chasing lightning’s tail to almost a complete standstill is more than he can handle at times. It will take time and we all know that he has nothing but success in his future. He’s just on a different path than he was before. Many of you have used the word “inspiration” when seeing Ryley and shower him with affection and say such things as, “you look so good”, “oh my goodness look at all you can do”, etc. Yes, I agree Ryley is an inspiration but not because he has come back from a traumatic injury but because he is Ryley! This is so vitally important to understand. Ryley needs to move forward in his life and to live the fullest life possible. He wants so much to go back to the way things used to be but we all know that’s not possible, but you can help. Just remember, Ryley is still Ryley and just because he is in a wheelchair he doesn’t need special treatment. Also, don’t let his disability make you uncomfortable….. I’ve witnessed some folks awkwardly approach Ryley. Treat him as you would any other person you would encounter. A close friend? Then a hug might be in order. Perhaps a handshake? Then a fist pump is appropriate. Ryley is still Ryley…don’t forget that and don’t treat him any different than you would anyone else. We will be packing Ryley up in less than 30 days and sending him back to UNCW as we would have over a year ago. Although this poses its own set of challenges Ryley needs to live and UNCW was a very big part of his life. His friends, his fraternity brothers and University officials are all ready for his homecoming. A bunch more prep is required for all the things he will need in his new home away from home and he will have one extra person along for the adventure. Mom is going back to school…well for at least the first month as we set up 24/7 personal aide support for Ryley in Wilmington. Kim will add several more nights to the already 196 nights away from home since the accident. But this is what parents and moms do…anything for their kids.
We continue to be overwhelmed with the sheer amount of support you have all provided to our family over the past year. I can’t possibly thank each and every one of you personally but know that you mean so much to us. As Ryley heads into the next chapter of his life he will continue to need special services and assistance, much of which is not covered by insurance, so he can live the best life he can. What can you do? The HelpHopeLive fund for Ryley remains open to accept your tax deductible donation OR you can just walk right up to Ryley and give him a big confident fist pump. Either will help more than you know!
We love you all!