Our son, Alex had a spontaneous spinal epidural hematoma at age 4 on October 20, 2009. He had neck pain which we thought was from playing. Alex was a very active little boy full of energy. When Alex woke up in the morning still with neck pain, he wasn’t able to stand up. Little did we know how life changing this day would be.
After 9 hours in the emergency room at Children’s Hospital in Pittsburgh, we learned that Alex required immediate surgery. The neurosurgeon only found blood in his spinal column and after much testing was unable to detect a cause leaving the diagnosis as spontaneous. There are only 30 documented cases of a cause not being found in children under the age of 18. There is no statistic for what occurred to Alex. The bleed was from C3-T5. We were told at that time Alex would be in the hospital for a week or so and then be transferred to a rehab hospital. That was not the case. Alex continued to have complications from the surgery including a spinal cord stroke causing further injury and shortly after contracted H1N1 in the ICU. He continued to struggle breathing resulting in a total of 10 chest tubes and needing to be revived several times as his heart would stop from his collapsed lungs. Alex had a 5% of survival and many surgeons had no solutions. We were so fortunate to have an attending doctor that insisted Alex seen by a cardiothoracic surgeon against the recommendations of the other doctors. Alex had an experimental surgery to help heal his lungs so the chest tubes could be removed-bilateral thoracotomy with talc pleurodesis. After 3 months in the ICU, Alex was finally able to get out of bed. At this point Alex already had a tracheotomy and feeding tube surgically implanted.
Finally Alex was released to an inpatient rehab facility, The Children’s Institute. He bounced back several times by ambulance to the ICU for pneumonia. In rehab we started to learn more about spinal cord injuries and the side effects such as bowel, bladder, autonomic, temperature control and losing the ability to sweat. Alex progressed being able to trial time off the ventilator and learn to breathe again on his own. He also had to learn how to use a wheelchair which at first was a motorized one. By the time of discharge he was able to push a manual chair.
Alex spent 202 days in the hospital before returning home needing a wheelchair, ventilator at night, with a trach and feeding tube. We decided to research and find out the most effective treatments for spinal cord injuries. Unfortunately we weren’t able to get the innovative programs in Pittsburgh. Currently Alex is under the care of the doctors at Frazier Rehab in Louisville, KY. They have aligned with our goal of recovery and not just compensation. The team in Louisville uses locomotor training as the building block of successful outcomes. Alex is one of the initial group of kids being studied through the University of Louisville Kosair Charities Center for Pediatric NeuroRecovery. Alex has not plateaued in recovery and continues to make progress now. We were told after a year he wouldn’t make any progress. Alex has proved the conventional mindset wrong.
We travel to doctor appointments throughout the year in Louisville and spend the summers in intensive therapy. Alex also has a home therapy program including physical therapy, occupational therapy and acupuncture. We are directed by the team in Louisville and the knowledge is being shared with our Pittsburgh team. Our therapists here have been very receptive and eager to learn more.
Inspired by our son, Alex, we want to allow more people with spinal cord injuries to explore what opportunities are out there for recovery. It is expensive to travel and stay in these places plus some treatments are considered alternative/holistic such as acupuncture. Medical insurance does not assist in these costs. We want to raise money to allow people in our area with a spinal cord injury the chance to reach Beyond Expectations.
We also want to help is with training of therapists in Western Pennsylvania. Locomotor training is not something they learn about it school. Training dollars are hard to come by on a regular basis. Two of Alex’s physical therapists from Pittsburgh have attended training seminars in Louisville, KY. They are applying their new knowledge not just with Alex but with patients with other conditions such as spina bifida and cerebral palsy. More people can benefit and this is just the beginning. We are encouraging a change in the typical treatment in Pittsburgh which includes braces (turning off muscles instead of turning them on) and adaptation (maintenance instead of advancing progression). It is hard to change an established practice, but we will Rise to the challenge!
Eric & Amy–Parents of Alex
Rise Again is a non-profit 501 (c)3 committed to spinal cord injury recovery in Western PA. We provide resources and grants to individuals to achieve recovery beyond expectations. In addition we will improve the knowledge of spinal cord injury recovery at therapy sites in our area.
Why Rise Again?
Alex started standing up at church with support of his hands on the pew in front and assistance keeping his knees straight by mom or dad The very first time he was brave enough to try at church, the song was “We Shall Rise Again.” Alex now is very accustomed to standing at church with some help and also kneels. We feel Rise Again is a significant message of hope for spinal cord injury recovery.
“We Shall Rise Again” (Young)
Come to me, all you weary, with your burdens and pain. Take my yoke on your shoulders and learn from me; I am gentle and humble, and your soul will find rest, For my yoke is easy and my burden is light.
Refrain: We shall rise again on the last day with the faithful, rich and poor, Coming to the house of Lord Jesus, we will find an open door there, we will find an open door
Board Members & Officers
Amy Brown – President
Erin Nock – Secretary
Board – Eric Brown, Jay Roach, Charlie Brown, Karen Halliday, Ryan Nussbaum & Tammy Corb