Sky's Transverse Myelitis Journey

We often take for granted or some days even despise the very things that most deserve our gratitude. Things like putting on our own shoes and socks, walking across the street, going to the grocery store, cooking our own meals and the list goes on and on and on. Until Monday August 13th, my mom (Sky Yandell) was able to do all of these things and then some, all on her own.  What started as a backache, turned into major back pain, followed by a trip to urgent care and an injection of Toradol for pain relief.  The initial thought was a kidney stone or disc issues. Little did she know, within hours she would be falling in her bathroom at home and immediately paralyzed from T9 down. I left work, we drove to her house and immediately called 911. Upon arrival they did several tests and determined she was having a "major neurological event" and chose to take her to North Memorial which was the closest level 1 trauma center. The decision of this ambulance driver probably saved us days, weeks or even months of trying to determine what was happening to her. We spent the evening in the ER and were moved to a room after being told they weren't sure what was wrong but they knew she had no reflexes, paralysis and completely clear Xrays and MRIs. The fear of the "unknown" was and still is very frustrating. She was seen by the head of neurology the following morning and he wanted to do some more MRIs to ensure there wasn't something wrong with the spine at a lower level. Those were also clear. On Wednesday they did a lumbar puncture and after getting the results back they wanted to begin treating the symptoms with IV steroids and made a diagnosis of Transverse Myelitis.  Transverse Myelitis (TM) is a disorder caused by inflammation to the spinal cord effecting the motor and sensory tracts on both sides of the spinal cord. This presents itself with weakness & paralysis, numbness, tingling, pain and bowel/bladder dysfunction. The cause in 60% of cases is unknown. After meeting with 2 neurologists the consensus is that hers was caused by biological medications she was taking for her psoriasis. They ran her on IV steroids for about 10 days, followed by oral steroids for several days thereafter. She spent almost a month at the hospital with treatments and therapy and then was moved to Courage Kenny for further rehabilitation. Rehabilitation is an integral part of the recovery and treatment of TM patients. TM patients are often left with permanent weakness and spasticity, which limits the extent of recovery. Recovery is mostly seen in the first 3-4 months but can take up to 2 years or longer. The sooner treatment begins, the better the outcome, so we are hopeful that she can come out of this a WARRIOR.  There are always new machines, exoskeletons, foot splints, Functional Electrical Stimulation devices that must be used everyday to keep your nerves active and reminding them what it is like to walk like normal even if it's just a faint memory. Pursuing clinical trials is expensive. Living in a wheelchair is unfairly expensive. Unfortunately, the stay at the hospital left her with significant medical bills even after insurance, and insurance only approves the rehab center for 120 days which gets her through early December. So far her job has been very patient with us while she's out but when FMLA is up, we aren't sure where we go from that point. We can only hope that they wait patiently for her healing and welcome her back when she is ready. If she has to go home in a wheelchair there are significant changes that will need to be made to her home in order for this to work. We are hoping to get a set of ramps as well to be able to bring her over for Thanksgiving and Christmas as well as she really doesn't want to be there for the holidays.  This condition has affected all of our lives in a way we never could've foreseen. She is one of the toughest people I know in dealing with such a drastic life change. There are so many peaks and valleys in the recovery process and she is trying to deal with them as best as she knows how. There are days when the pain and frustration is physically and emotionally overwhelming and yet she continues to pull through for herself and her family somehow.  This is our plea to you all, our amazing community of friends and family. We are looking to raise enough funds to help Sky get back on her two feet, come home, put the medical bills behind her and encourage her to see the light at the end of the tunnel, even if it’s just a slight glimmer.    I had some bracelets made to raise awareness as very few people realize this out there being only 1400 cases are diagnosed each year in the US. I am selling the bracelets above for $5 each. Shoot me an email ([email redacted]) if you'd like me to get any out to you! For those who are unable to donate, we absolutely understand. We just ask that you say a prayer of patience, hope and healing.  Thank you all. We are tremendously grateful.    Christina