Emerging from the darkness of her son's devastating illness: One Mother's story

By Donna Jones

On September 25, 2002, my life was filled with great light, love, and pure joy with the birth of our one and only child. On February 16, 2014, my life fell into the deepest pit of darkness and despair when I found myself helplessly staring at my 11-year-old son, my baby, attached to wires and monitors and being swallowed by a sea of emergency room lab coats. This wasn’t the plan. This wasn’t the way his life was supposed to be. This wasn’t real. It was the nightmare of all nightmares. He was in danger and I couldn’t save him.

It would take a village to save a life

Within about 48 hours of experiencing a slight temperature and headache, our son’s health suddenly and rapidly declined without rhyme or reason. We tried home remedies and every over-the-counter product we could find to reduce fever or help with headaches, but our instincts told us something sinister was brewing in his body, something beyond our control. Multiple trips to the pediatrician and testing for everything from strep throat to mononucleosis only proved our instincts right — whatever this was, it wasn’t textbook, and it was serious. After catching his weak body before it hit the floor of the doctor’s office, we headed to the emergency room at Arnold Palmer Hospital for Children. The saying goes that it takes a whole village to raise a child, and I had a feeling it was going to take a village to save mine.

As parents, my husband and I always try to protect our son from strangers, walking into traffic, belly aches, pool drowning, bullies, monsters under the bed, and heartaches. We are relatively private people simply trying to live a good life and keep our child happy and healthy. Sure we boasted to friends a few times about how we were able to stay one step ahead of those minor medical emergencies, arming ourselves with bandages, cold medicines and, of course, chicken soup. If our child was happy and healthy, that meant we were doing a good job as parents, and yet without warning, our happy routine was shaken to the core as our son looked at us with a blank stare. As medical staff came in and out of our son’s room, we asked ourselves, “What did we miss? Did we fail? Why couldn’t we protect our child from this?” Then we heard, “Mr. and Mrs. Jones? We have some questions for you. We sure could use your help.” There was urgent work to be done. Doctors and nurses immediately brought us into the fold, and with constant communication they became our best allies. As parents we are our child’s best advocates, only this time we had an army by our side.

A miraculous recovery

Dr. Lawrence Spack, pediatric intensive care physician and Medical Director of Pediatric Critical Care Services at Arnold Palmer Hospital for Children, was our general as he led critical care and intensive care medical teams, area specialists, physicians and nurses, technicians and yes, parents, too. Every morning the medical team included us in their war-room like strategy sessions. Each person gave a report, including me. I shared information about my child’s sleep patterns, any reactions to medications and treatments, any changes in his mood or condition, how much he had to drink, was he able to eat. The medical team took notes. Then they spoke. I took notes. Plans were decided upon, changed, and adjusted several times depending on test results, but there was always teamwork. This was not a time to be intimidated. We had invaluable information to share as parents to help the medical team put the puzzle pieces together. If our son stood any chance of survival, we had to be present, to be involved, to ask questions, and to listen and allow doctors to treat our son.

As mom, I knew that I needed to keep busy as we waited for tests. I appointed myself the unofficial overseer of everything. I was patient advocate, nurse’s assistant, medical analyst, clergy. There was not a drop of water or bleep on a screen that I didn’t chart or ask questions about. Taking a cue from a friend who had been going through breast cancer treatments, I took to social media. I posted daily updates, good and bad, and I asked for prayers. What happened next was nothing short of a miracle. Family and friends began to spread the word of our son’s condition. Our Facebook posts were re-posted. There was an outpouring of love and support from friends of friends and relatives of friends, people from around the world whom we had never met but who wanted to share encouragement. It seemed as though our family of three had grown into a family of thousands, all sending their love and best wishes to our baby boy and his parents.

Labs scrambled to analyze samples of my child, but answers would take time, if they were to come at all. Our son’s body began to rebel as his entire spinal column and portions of his brain became inflamed. He could no longer sit, walk, stand, or feed himself. He no longer knew us and was hallucinating. We were now at the mercy of the unknown. I just stood at my son’s bedside, mumbling prayers I had memorized as a child. I was feeding my son some mashed food, wiping his face for him and changing him as I did when he was an infant. It was surreal and in ways seemed as though no time had passed, but out there in the world, our social media postings had set off a chain reaction like no other. There were fundraisers held in my son’s honor to help offset medical costs and meals being left in our home. Cards and letters from our son’s classmates, family, friends and from strangers poured into the hospital room. Strangers also played a key role in our child’s healthcare as bags of plasma from anonymous donors were used to rid our son’s body of toxins and promote healing. While the illness is still unknown, it is suspected that our son may have been stricken by ADEM or Acute Disseminated Encephalomyelitis, a rare autoimmune disease marked by widespread attack of inflammation in the brain and spinal cord.

With each treatment our son became better, stronger, and more like our son. We could feel the energy, the light, the love, the prayers, and soon we witnessed those miraculous breakthroughs you only see in the movies. Our son was learning how to walk again, to feed himself. He recognized us. It was as if the dark storm was passing and beams of light poked through. While the recovery was just beginning, the worst was finally over, and in the process we had learned how to work with and trust dozens of strangers to help our son.

No matter what you’re facing, you aren’t alone

I want to share a small part of our journey in the hope of reaching others with the message that no matter what you’re facing as the parent of a seriously ill child, you are not alone in your fear, your anxiety, or in your faith and hope. We are so thankful for the amazing doctors, nurses, staff and volunteers at Arnold Palmer Hospital and for those professionals from throughout the state for their care, patience and understanding when I lost mine.  We are thankful to family and friends for their never-ending love and support, and we are so very thankful to all those strangers who prayed for our son or took the time to donate life-saving plasma.

And how is Hunter doing now?  He still needs to be monitored, but he is a happy normal boy, albeit one with a little more understanding of the sorrows in this world than he used to have. He made it his priority to start “Hunter’s Helpers” in 2014 to bring toys and gifts to the children at Arnold Palmer Hospital and Brooks Rehabilitation Hospital in Jacksonville.  His collection reached more than 250 families. His story of bravery, hard work and giving back to others continues to inspire others. Our entire family has changed from this experience, as have all of the people that were part of it.  In the end, it did indeed take “our” village to save our son and for that village, we are forever grateful.