Jay Killen is fighting to get his life back. Please help us get him the treatment he needs to walk again!
Through a series of miraculous events over the next 12 hours we learned that this was not the case, and our lives changed forever. I sat with Jay, alternately playing his favorite Rush and Wilco songs and begging him not to leave me so soon. That night into the next morning, it became clear to me and to the doctors that Jay was not brain dead but was paralyzed, trapped inside his body, able to move only one leg but conscious and clearly responding to questions by shaking that leg. The amazing group of doctors dropped everything and started working on what could possibly be causing Jay’s paralysis. We went through Rabies and Guillain-Barre before they landed on Botulism. The symptoms all fit. They called the CDC and the anti-toxin arrived in the middle of the night and was administered.
And that is where our journey began. We have no idea what it was that Jay ate that was tainted with Botulism bacteria. When ingested, Botulism bacteria creates a toxin which attaches to nerve endings causing paralysis of all voluntary muscle function. The only way to recover is to regrow those nerve endings, a process which can take many months, and then to re-train all of those muscles to do what they did before. Everything from walking to breathing to focusing your eyes is affected.
Jay spent 3 months in the ICU and then moved to a long term acute care facility. Through the months he slowly came back to us, starting to move his shoulders, nodding his head, being able to blink his eyes. For a time his eyelids were sown shut because he would open them but could not close them again. He communicated in yes and no for a long time, first with his leg, then with his head. When he started nodding we worked out a system of spelling where I would say the alphabet and he would stop me on a letter and we could spell words and sentences. It was time consuming but so freeing for him to finally be able to express his thoughts! From there we have moved on to mouthing words and talking. He has weaned off of the ventilator and worked his way to being able to sit up in a chair for periods of time and participate in some physical and occupational therapies each day.
Throughout this process we have been so blessed with friends, family and volunteers who call themselves “Team Jay Killen”. These amazing angels have made it possible for me to continue working and also get some much needed rest throughout the week. Our insurance coverage is through my job and I am the sole bread winner for our household so it is essential that I be able to continue working. The Team is also an essential part of keeping Jay motivated and positive through his long recovery away from home. They make him feel safe and loved with their dedicated presence over the last year.
Recently Jay suffered a setback and developed various medical issues while staying in a nursing facility. He is mentally ready for rehab but his body is not quite there so he has to stay in skilled nursing facilities while we wait for him to heal and grow stronger. The problem is that our insurance coverage for that care level is about to run out and he needs more time and more care to have a full recovery. He will need in-patient rehab therapy once he is well enough to participate. Then, we are told, he will need at least a year of intensive therapy once he returns home. Depending on how much he recovers before he comes home, he will need care and equipment to allow him to live at home and allow me to continue supporting our family.
Jay is a proud man and does not like to ask for help. However, we have learned over the past year that God has a plan for us and we just have to trust in Him and allow Him to work in our lives through others who are willing to offer the help we need. So we are asking for help. Anything you can give will be much appreciated. We hope to raise enough money to provide Jay with all of the treatment he needs to be well and whole again. Given the proper care and time, Jay should make a full recovery. Please help us try to make that goal a reality. Without this care he is almost certain to spend the rest of a considerably shorter life in a wheelchair or in bed.
If you cannot help with our fundraiser we ask for your prayers, which lift us daily and help us greet each day with optimism and faith in the healing power of God.
Thank you all! With much love,
Jay and Amanda Killen