December 13, 2020
Wow - it's been five years since the last update! Turns out time flies whether you are having fun or not! Here's a quick recap of the past 5 years since the last update:
2015 - Intensive physical therapy at Next Steps - Jesse's progress was slow, but noticeable. Unfortunately his injury is bad enough that PT alone could not get Jesse to independence.
2016 - we evaluated different options for something more than physical therapy to help Jesse recover. Applying for different clinical trials, talking with doctors around the world, we traveled to Cleveland and Miami in search of something to help him. Jesse was invited to be in a Clinical Trial at the Miami Project, but he had to wait until he was 22 due to FDA requirements. So we stayed in Chicago until January and moved to Miami in January 2017.
2017 - turned out the clinical trial was much more risk to Jesse than possible benefit. Despite losing a year for something that turned out not to be in Jesse's best interests, the move to Miami was still a success. The wheelchair community in Miami is amazing. So many other paralyzed people welcomed Jesse with a warmth and generosity that he instantly felt better in Miami and learned so much from these new friends. In fact, he met the best friend anyone could ever ask for in Miami. Joel has been a great friend and mentor to Jesse having been hurt at the same age and willing to help guide him through accepting his injury and learning to live with it. It was tough leaving Miami at the end of 2017, but the goal was to get back to Chicago, pursue new treatments and plan for Jesse to eventually move to Miami permanently.
2018 - we revisited Cleveland, talked with doctors in China and Thailand, applied for clinical trials and learned that epidural stimulators being tested at University of Kentucky were the new hot thing for paralyzed people. So we applied for Kentucky's clinical trial only to learn that there were 2,000 patients who applied ahead of us - for a trial of 50 people! We had to find another option!
2019 - the other option for an Epidural Stimulator was Thailand. As crazy as it sounded, we learned they had completed 75 patients and one of them was a surgeon from Canada. He was nice enough to speak with us about how it benefited him and with that knowledge, Jesse and his dad booked a trip to Thailand to get Jesse an epidural stimulator implanted on his lower spine. Result: it has worked to stabilize Jesse's blood pressure allowing him to get off blood pressure boosting medicine. At times he can use it to reduce spasms. He has used it to help strengthen his core, but overall, it has not changed his life since it has not allowed him any new independence. We didn't think it would, we want for the benefits he has gotten from it, but there was a chance it could have helped him more.
2020 - everyone knows this has been a tough year for all of us. The pandemic really put a limitation on disabled people and people who are in clinical trials that suddenly were put on hold. For Jesse, we had planned nerve transfer surgery having visited the top neurosurgeons in the country over the winter of 2019-2020. The surgery was of course canceled due to Covid, but that may have been a blessing in disguise. That's because in the interim, thanks to Dr. Justin Brown in Boston, he referred us to Dr. Jan Friden in Switzerland as the only doctor Dr. Brown knew in the world who would have a chance of getting Jesse's triceps and wrists working again!
Dr. Friden and his staff have been incredible as they have met with Jesse twice on Zoom meetings and continue to coach him and prepare him for the surgery and rehab. The surgery was originally scheduled for December 3rd, but with Covid spiking in Switzerland they had to postpone the surgery until next year.
It is this surgery and rehab that we are currently asking people to donate toward. The costs will be at little over $250,000. There are no doctors in the US who provide this type of surgery, but if you search Dr. Friden's name on PubMed you will see his has authored or co-authored over 200 medical journal studies in his career and is truly "the real deal"!
Please donate generously, Dr. Friden is confident he can get Jesse's right arm and wrist working again and is hopeful they can do his left arm in the future. This treatment, if successful, will actually give Jesse some of the independence that he has been fighting for over the past 7 years. We very much appreciate every donation and well wishes - as tough as Jesse's life is on a daily basis, to see him fighting through it and working so hard to get his independence back is what keeps us all going. Thank you!
November 19, 2015
I guess time flies when you’re not having fun too! Given the comments we’ve heard lately, it was time we did another post to bring everyone up-to-date and dispel a few myths.
Things are far from “normal” and that’s one of the many things that upsets Jesse. The fact is there have been no posts because we are all so busy trying to care for and support Jesse as well as do our jobs, work on his therapy and treatment options, take care of the house, pay bills and do all the other things that keep us all so busy these days.
Jesse has continued to amaze everyone at his rehab clinic with his ability to work so hard in therapy, with how fast he catches on and does things and with his pure athleticism. He continues to build up his core and his arms/shoulders. That said, he still has a long way to go (sometimes it feels like it is too long for him) to get to the point where he can do almost everything himself instead of being dependent on others for most all of his activities of daily living. He hates that and who could blame him?
“Things must be getting easier” – not really. True, we’ve learned how to do certain things better, but as far as his injury and his recovery, things really are not getting easier. Possibly the opposite as it has already been over 2 years and his recovery still has so long to go. So the passing of time just builds anxiety and stress as any recovery from spinal cord injury takes a long time and Jesse is part of the immediate gratification generation, not a good mix.
“If there’s anything I can do, just ask…..” – we hear that from many of our friends and really appreciate it. With this update and the large network of people who read these updates and all the people who YOU could forward this to, we are hoping people can help us with the following:
Referrals for a live-in helper for Monday through Friday. He really wants someone closer to his age that he can connect with and enjoy working with on his recovery. Male or Female, good English skills, and most importantly closer to his age than his parents’.
Keep spreading the word. We want to thank everyone again for your generosity and support. But he’s still millions short of what he is going to need over the next 10 years. So please feel free to forward this update to anyone and everyone in your contacts. We are trying to use what little money he has in his medical care fund for new treatments and bringing him wherever we need to for any treatment that can bring back his hands and sensation.
Final words: Jeff Sebert of Sebert Landscaping and Great Impressions Landscaping is not only a great businessman, but he’s a great humanitarian. His company is currently building Jesse a backyard oasis. A place where he can spend time outside with friends, do archery, build bon fires, hit the hot tub and play games. We will post pictures and a more formal thank you on the web site once it’s done, but we had to mention it here since it is happening right now and the gift he’s giving Jesse is nothing short of amazing. Thank you Jeff, Stephen, Lou and everyone working on the project, we can’t thank you enough!
Final words 2: We have a lot of other people to thank and a lot of other people who have made a difference in our lives and Jesse’s. We have a long way to go and we know that if Jesse keeps pushing, eventually he will get enough recovery to be happy again. We love you all and will try to do these posts more often. Thank you for your support.
December 2, 2014
He’s home – finally! 7 hospitals, 12 months, thousands of miles of travel and we finally got him home 4 days before the anniversary of his accident. Our lives are busier than ever, as we are now doing everything we were doing before, plus doing all the things the nurses and assistants did when he was at the different hospitals and facilities.
The good news is he’s home. No more nurses coming in to take his vitals every few hours, no one waking him up for medicines, room cleaning, food delivery, etc. A hospital is no place to get any rest!
His dogs are with him, he has just started to have friends come over to hang out with him, and although all of these things have their downsides, overall I think Jesse is happier to be home than at a hospital.
Our primary goal is to get him out of pain and into a daily routine that keeps him busy, has him doing several hours of rehab whether at home or at out-patient rehab and has him enjoying a little bit of each day.
The house is still under construction, but Jesse continues to fight and impress us everyday. When he’s not in pain, he will still make jokes, come up with interesting conversation and want to do more things with more people. He has started to let people visit with him and he’s really appreciated everyone who has visited and just talked to him as they always would, not focusing on his injury or treating him special. The more “normal” we can make his “new normal” the better.
The battle is still uphill, but we’re hoping we can get to the top soon. There are exciting new developments and procedures for spinal cord injury with the promise of stem cells repairing his injured spine still several years away. We are going to do everything we can to get him any/every treatment he qualifies for. The focus is to get his hands and wrists functioning. It may take the next year or two, but nothing is more important to his quality of life than regaining control of his hands and to some extent his wrists as well.
Please understand that we greatly appreciate all of you and we wish we could communicate better with everyone on a daily basis. Thank you very much – from all 4 of us – for all of your support. We are going to continue to look for both financial and volunteer support as we explore these new treatment options for Jesse.
So thank you – we love and appreciate all of you – from Dave on behalf of Jesse, Kathy and Elliot
July 14, 2014
Jesse is receiving treatment at Kennedy Krieger Institute for almost one month and here are some highlights:
His Triceps are Moving! Others told him he didn’t have them and would not get them back, KKI used electronic stimulation with physical therapy and within 3 weeks he has his tricep muscles coming back and he can feel them when they use the e-stim on them!
He’s Getting His Trach Out! Met with the ENT on July 7th and got the green light to start the 2 week process to getting the trach pulled.
Had a seizure on June 30th – they never did figure out what it was – but he got to see the John Hopkins Hospital ER and got his Dad to fly out the next morning at 6am, so it wasn’t all bad.
Can feel more in the fingers and torso, even his legs have some light feeling in them.
All his health issues remain stable or improving, he’s gained 20 pounds since his arrival!
He’s an inspiration to all the other patients in the gym. Picture Jesse having to exercise on his side because of his still-healing wounds, and yet he pushes himself so hard that people notice and want to do more themselves.
So maybe everyone’s prayers are finally being answered or maybe Jesse’s bad luck finally ran out or maybe he’s just a warrior or probably it is some combination of all of the above, but whatever it is, please keep doing what you’re doing and telling others about Jesse.
June 26, 2014
Jesse really took a journey this past week. He physically journeyed to Baltimore and the Kennedy Krieger Institute. On Thursday the 12th an amazing organization called Grace on Wings (graceonwings.org) offered to take Jesse to Baltimore on one of their two specially built air ambulances. They donated the plane, crew and made all of the arrangements. They were amazing. (There was still a significant cost for fuel, etc. and we have a special thank you to Grandma Lee and Grandpa Mort for paying those costs for Jesse.) The founder and pilot, Hal Block, weaved the small twin engine plane through thunderstorms, missing every bit of turbulence and rain, to land us like a butterfly in Baltimore.
Jesse was then driven by ambulance to Kennedy Krieger Institute where they were ready and waiting for him.
Since Jesse arrived, the attentiveness, professionalism, compassion, knowledge and care provided by the nursing and doctor staff has been nothing short of amazing. We feel very fortunate and blessed to be here. There was a mishap with Jesse’s tracheostomy while he was being turned and he was in terrible pain, 3 hours later he was back at therapy. He is so determined to recover.
KKI is treating Jesse’s wounds with electronic stimulation and between Friday and today it has already shrunk 10%. They have the latest equipment in every phase of his treatment and a staff that takes great pride in providing the best care possible.
Last night David and Jesse spent 4 hours with Patrick Rummerfield. If you don’t know who Pat is, check out his web site at www.rummerfield.com. Pat has taken Jesse under his impressive wing ever since the first day he heard about Jesse’s accident and is the main reason we are here at KKI. If Jesse can achieve what Pat has achieved, he will truly have his life back. It was an awesome night talking with a truly amazing person who gave Jesse lots of reasons to be encouraged and inspired. Pat and the people from Grace on Wings are the kind of caring, giving, altruistic people that restore your faith in mankind!
Look for another update soon about that.
May 28, 2014
Jesse is currently at Holy Family Long-Term Acute Care Hospital in Des Plaines, IL – while here the last 5 weeks his wounds have greatly improved and he has gotten much stronger. He is eating a little more than before, but not full meals yet. He can now twitch his fingers on demand, only small twitches at this point, but it shows there is some nerve activity going on. We are hoping with the right treatment and physical therapy that a lot more movement and sensation comes back.
He clearly needs more function than what he has now to live a fulfilling, happy life, so the real good news is that he has been approved, and accepted, to go to Kennedy Kreiger Institute in Baltimore, Maryland. KKI is led by Dr. John McDonald, the doctor who cared for Christopher Reeves as well as Patrick Rummerfield, the world’s first fully recovered quadriplegic. (Pat is also one of Jesse’s advocates and mentors, talk about having a great person in your corner, I didn’t even have to ask, he just stepped up to help Jesse because he’s that kind of amazing person.) Dr. McDonald invented the functional electronic stimulation exercise equipment being used by leading rehab centers around the world and at KKI they will use it extensively to give Jesse the most intensive physical therapy available anywhere. We are so grateful to all the people who have helped us get Jesse accepted and approved.
We still need to figure out HOW he is going to get there on June 9th since he is not in good enough shape to just wheel onto a commercial airline, could be a $30,000 air ambulance flight from what we are hearing, but we are going to be exploring any and all options this coming week. [if anyone on this email has any suggestions, connections or ideas, please let us know, we need to identify some mode of transportation for him asap, we will do whatever it takes to get him there, we owe it to him after what he’s been through these past seven months!]
We are also equally indebted to and appreciative to all of you who have donated your money and/or time to helping us with Jesse.
We are truly appreciative of all the people who have helped us in every way and although we have to continue to keep our hands out because his needs are so great, that should in no way indicate that we are anything less than grateful, appreciate and honored by all those who have helped and will help in the future.
May 1, 2014
Jesse continues his long and twisting path to recovery. He is currently at Presence Holy Family Hospital in Des Plaines. Holy Family is now a long-term acute care hospital. He is there to work on healing those pressure ulcers, getting strong and healthy enough to have the “trach” removed and do more therapy. Unfortunately, while working on health concerns, he is not doing a lot of therapy and his recovery is delayed as these concerns are addressed.
However, his desire to look to the future has improved.
Jesse’s interest in sports has perked up again as he has watched the Bulls (boo) and the Hawks (yeah!) again.
He is enjoying seeing pictures of family and friends. Feel free to send some over via email to Sheri, Sara or Elana.
He has passed the swallow test and is beginning to eat real food. Of course, we are all willing to bring him anything his heart desires, although his appetite is not quite up to speed yet.
These are baby steps (with a few steps backward), but overall he has moved forward. Thank you all for your concern and support in getting him this far. Much more to come!
March 25, 2014
Thank you to all who have contributed to HelpHOPELive in honor of Jesse. Your spiritual and financial support is really helpful to the family.
Jesse and family continue along the long, bumpy road. While healing from the surgery, Jesse has had several cases of pneumonia, bad reactions to some medications and naturally, some frustration.
However, he has also had more movement in his arms and twitching in his thumbs (which usually leads to more movement.) He can bring his right hand up to his chin. With the assistance of some arm support, Jesse was able to paint a picture. He always had artistic abilities and the picture is quite impressive.
Jesse’s voice is also making a comeback. When he has full air coming through the pipe, his voice is clear and fully understandable. Physically he is making progress.
Speaking of physical, Jesse is currently at Alexian Bros. Medical Center where he is being treated for his recent bout of pneumonia and the MRSA virus. This facility is close to their home and makes that part of life easier for Kathy and David, as well as for other family members to visit and support.
We look forward to telling you of more progress…and while it is slow in coming, he is inching forward.
January 12, 2014
Since the surgery Jesse is in lots of pain, recovering well at the surgical site. Jesse is getting his fight back, so these are great signs. He’s being transferred to RIC today.
With our collective prayers answered, we hope he has good health and a great rehab moving forward. Your donations and support are helping keep him motivated in the right direction.
January 8, 2014
On 12-31-13 Jesse underwent an 8-hour surgery! The doctors cut into his stomach and hip to help repair and patch his esophagus and neck. The neurosurgeon removed the metal plate that was installed in his first surgery. The doctors removed the large abscess in his throat as best they could. Over the past 10 weeks, this young man has gone through several surgeries, had various infections and is now looking at another long recovery time just to get back to rehab.
While the next 6 - 8 weeks will be very tough for him, we are hoping that this will help his recovery in the long term. Thank you for your collective prayers and best wishes for him . We need everyone’s support for when he recovers from this newest challenge.
