Help Tyler Defy the Odds

Hi everyone, My name is Amy and I am Tyler's mom. Many of you may know Tyler's story, but for those that do not, here is some his story...  

Prior to his injury, Tyler was an very active guy...going to school, working full time and playing hockey at the Junior level in Canada. Ty was good at alot of sports, but hockey, well, there was nothing better for Ty--he has always loved it and has played since he was 6.  

On July 27, 2019 Tyler suffered a devastating injury when he shattered his C5 vertebrae while swimming with friends. He was instantly paralyzed from the chest down. Tyler was rushed to Upstate Hospital in Syracuse where he underwent two major surgeries and he had plates and screws and a titanium cage implanted.  

For the next 18 days Tyler fought for his life..he had to be intubated twice and endured things no parent ever wants to see their child go through. His father and I and Ty's siblings kept a vigil over him and finally after 18 days he was able to be released to a rehabilitation hospital.

On August 14th we headed to Sunnyview Hospital in Schnectady NY.  Jim (my husband, Ty's dad) had to go back to work after all his time off, but I remained with Tyler and for the next 79 days, that was our home. Family and friends made the long trek to visit as often as they could.

When Ty arrived at Sunnyview, he came in on a stretcher and was unable to move anything except his right wrist a little bit. To say he had a long road ahead of him, is an understatement. His prognosis was a difficult one, but Tyler was determined to become as independent as he could and to work hard to try and regain any movement he could.

With the amazing care of the doctors and nurses, social worker, aides and especially Tyler's therapists, Casey and Allison, Tyler was able to reach goals that we were told "he shouldn't be able to do".  It became Tyler's theme..and his body responded to the FES therapy (functional electrical stimulation) very well, along with hours a day of physical and occupational therapy.

Despite the devastating nature of his injury, Tyler has remained hardworking, determined and optimistic. He faced all the therapy with a great mindset and gave it everything he had. He tried to inspire other patients during his time in Sunnyview as well and I could not be more proud of him.

By the time it was time to leave Sunnyview 79 days later, Tyler had made gains that we didn't think were possible and we couldn't wait to continue additional therapy. Tyler had gained movement in his upper arms, and built strength in his shoulders and back. He is still paralyzed from his chest down, and does not have finger or hand function, but somehow finds ways to help do things for himself.

Unfortunately after the "acute" phase of an injury, all that is available to spinal cord patients is outpatient therapy and you are only allowed so many per year via insurance so that meant therapy was only twice a week for 2 hours a day (which we had to drive all the way to Syracuse for each time)which isn't nearly enough for Tyler's level of injury, but you do what you have to do and try and make the most of it.

Luckily I was able to find a program at one of the top spinal cord facilities in the country in Chicago that not only offered an intensive day therapy program (meaning 5-6 hours of therapy a day), but also the chance at getting into clinical trials. We had been applying for the last year across the country to get into trials , but Covid really shut alot of things down and even without that, it isn't easy to get into some of the trials as they fill up quickly. So this opportunity was an amazing one and after some fundraising, and using our own funds as we have since that July, we were able to make it happen. It was a very expensive trip as accommodations, food, copays and all other expenses were something we had to pay for out of pocket for 7 weeks. But this is Tyler's future and we needed to make it happen, whatever the cost, and we are so blessed that so many people helped us. 

Tyler headed to Chicago on October 10th and started this next phase of the journey. What a blessing it was..he worked so hard for 5 hours a day in therapy for OT and PT and they worked quite a bit on his strength, and he can now do a transfer by himself. He got to go swimming, rode a handcyle, and they worked extensively on his hands trying to open them up more, as well as bed mobility and day to day tasks that he could try and do himself.  

The best news was that Tyler was accepted into a trial--we were so thrilled as it has to do with more electrical stim. They put stim pads on him and coupled with magnets and sensors, they sent the stim down through his spinal cord, below his level of injury to see if there was any signal getting through. They discovered that there is signal getting to his fingers as well as his legs!! Now, does that mean he will regain function?--no, there is no way to know that and for Tyler's level of injury, the chances of walking again are slim. However, those that know Ty, know that he has done nothing but defy the odds since this has happened so he will keep pushing forward and working to get as strong as possible and make as many gains as possible. Tyler has always been the kid that helps anyone he can and looked out for all his friends and family. He would give them his last dollar if they needed it.  

So after this long winded story, here is why we are asking for help once again.. 

To this point Tyler's medical bills are well over 900,000.00. We are blessed to have good health insurance, but there has been much that wasn't fully covered and many co-pays, medicine and medical equipment that wasn't covered at all.

The biggest expense we have now incurred is the cost of therapy. Althought insurance will pay for one hour of pt and/or ot it is only for 50 sessions a year. Meaning less than once a week he would get an hour of basic therapy. Tyler needs activity based therapy which we have been receiving at Magee Rehabilitation Hospital in Philadelphia the last 3 years (each fall). There he has gotten so much stronger, to the point they deemed him able to use the Exsoskeleton to walk in! That is not something that we ever thought would happen due to his injury level. However at Magee the program we go to is a pay program so that means they can do more and not have to try and jusitfy it to insurance and he also is able to get 4-5 hours 3 times a week of very intensive therapy. It has made an incredible difference for him and he can now do things he couldn't before, he even regained some tricep function which was nonexistant the first couple of years of his injury. Tyler has gained so much strength as well. His spinal cord doctor is thrilled with all that she sees everytime we come back.

Unfortunately, this program is out of pocket expense and it is also 6 hours away, requiring us to stay in a hotel for a month. As you can imagine, that all adds up. The program alone is 1000.00 a week, and hotels are very expensive. We average around 12,000-14,000.00 plus each time we do this. It has taken a toll on us financially, but this therapy is a medical need for Tyler, it isn't just about making gains. He needs therapy to keep his muscles from atrophying, to keep the strength he has so he can do more for himself, it helps with bodily functions, spasms and neuroplasticity, (which encourages the brain and nervous system to form new connections, compensating for damaged pathways) reduces secondary complications (osteoporosis, skin breakdown, cardiovascular problems, etc.).

We have been very blessed to this point for the help that has come our way to let Tyler get to the point he is now (the other money showing raised was from a couple years ago) , but we find ourselves, once again, in need to make another trip happen this fall. We have incurred alot of extra large expenses this last 6 months (his van has needed repairs 3 times, new tires,, wheelchair repairs, medical copays/expenses not covered, etc along with my medical bills for surgeries, etc.) and I have pretty much exhausted all loan options at this point.

Although it is incredibly hard having to ask for help again, we do so because Tyler deserves every chance he can get to get as strong as he can get and be able to live as independently as he can. It is a terrible position to be in as a parent knowing what your child needs, and not being able to provide it. So that is why I am asking for help as hard as it is to do so. I do it for Tyler.

I am hoping that we can set up a fundraiser

next year that may grow and give him help each year to get to therapy, but unfortunately with my own health journey this year, I just haven't had a chance to try and figure something out (we were thinking maybe hockey tournament or golf tournament). If anyone out here reading this is good at fundraising, we would be very grateful for any help, ideas, suggestions, etc. on that front.

Thank you for reading all of this...I know it is a lengthy story, but there is so much more to tell and I would like to invite anyone that hasn't seen Tyler's story from the beginning to visit his facebook group page... it is called Tyler Stockman's Recovery Page and anyone can join. His friends started it when Tyler got hurt and it grew and grew and I continued on with it posting updates and pictures and videos through our entire journey so far.

I hope, with your help, that we will be able to post updates on the next phase of Tyler's rehabilitation journey!  Please join us in helping Tyler to "Defy the Odds!"  #StockmanStrong