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 (Acute Respiratory Distress Syndrome-ARDS) 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 every specialist offered little hope.  We were so fortunate to have an attending doctor that insisted Alex seen by a cardiothoracic surgeon against the recommendations of the other doctors in the PICU. 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 plus is at the forefront of research.  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 in Pittsburgh trying to maintain progress.

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 since activity based therapy is not readily available in all locations.  Medical insurance does not assist in these costs plus equipment often isn’t either.  We want to raise money to allow people with a spinal cord injury the chance to reach Beyond Expectations. 

In January 2019, we have officially merged with the Team Alex Fund to Rise Again.  We will now be able to offer even more grant opportunities to broaden our reach.  Team Alex was named after our son and the success the McWilliams family had in raising funds to help with his initial equipment needs.  The Fund continued for 8+ years providing grants to many children. Rise Again continued ahead with their strong legacy merging our missions.

In January 2024, after 10 years Rise Again has discontinued our grant giving program.  We are so thankful to all the supporters that have significantly impacted our grant recipients.  Rise Again is now going to push ahead to bring about change in Pennsylvania to grow middle and high school adaptive track. Currently there isn’t another organization helping to match adaptive athletes to equipment so they can fully participate with their schools.  Rise Again will lead this effort to opening up the door for adaptive athletes.

Eric & Amy–Parents of Alex

Rise Again is a non-profit 501 (c)3 that supports individuals with spinal cord injury or illness to believe and reach beyond expectations. Rise Again will also provide grants to professionals and organizations who focus on improving the quality of life of those affected by spinal cord injury or illness..

Why Rise Again?

“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