On December 23, 2015, our five-year-old daughter, Eden, collapsed on the ground after doing a backbend on our living room floor. Within 30 minutes, she was paralyzed from the waist down. She was rushed by helicopter from our local hospital to the PICU where she was diagnosed as a complete paraplegic because of a spinal cord stroke at T8/9. After 2 months of inpatient rehab, she was discharged with the dire prognosis that she would never recover, and that we should prepare for a very difficult life ahead.
Our family wasn’t prepared to accept that prognosis and began researching therapy centers that believed in recovery and offered hope to families like ours. In April of 2016, we went to Louisville, Kentucky to attend the 3-month pediatric program at Frazier Rehab. Within days Eden began to make positive strides. Within weeks, she was taking steps while being supported and assisted. When we saw the amazing recovery Eden made, we knew we couldn’t go back home to California, and we moved to Louisville full time. This came as a surprise to the director of the program because their program was specifically for “episodes of care” and not full-time therapy. But as parents, we knew we had to fight for the life that Eden deserved.
Eden has been doing therapy 5 days a week for 6 years now, and she now functions at a T12 level. When she was first injured, she couldn’t lift both her hands off the ground without falling over. With hard work, dedication, and access to cutting-edge therapy, she rides horses, plays tennis, rock climbs, and is a part of her school’s archery team. She is fully independent and thrives along her able-bodied peers.
She uses Neuromuscular Electrical Stimulation (NMES) and when it’s turned on, her legs lift, her feet move, and her muscles contract. That means that her spinal cord is still very much functioning, still able to transmit messages from her brain to her body, which we’d been told was impossible. Every day Eden invalidates the old SCI theories and proves that recovery IS possible.
A spinal cord injury diagnosis is devastating. An SCI affects EVERY part of your body—every organ, every system. But there is hope. Recovery is possible. And, most importantly, there IS a cure out there. We just need to find it. Our family will not give up the fight until we do.
