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Tragedy into triumph

How one Air Force kid demonstrates the power of determination one step at a time

Jacob Wald, center, offers up his encouragement to his soccer team from a wheelchair he has since abandoned as he works his way back from a rare disorder. Courtesy photo

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It's not uncommon for a young boy to dream of defying the odds - reaching that special pinnacle - be it finding a rare four-leaf clover in a field of green or entering the Baseball Hall of Fame, the only pitcher to retire with a 1.79 earned run average.

Jacob Wald had plans to stand out above the crowd, too ... just not as one of the few that contract Transverse Myelitis, a disease that disrupts the transmission of nerve signals leading to weakness or paralysis of muscles.  Like a shamrock, it's rare. Only 1,400 are affected every year in the United States.

"I felt like someone was stabbing me in the back with a knife," Jacob, 13, explained of the day, Jan. 6, 2015, that the disease attacked without warning.  He was sitting in his sixth grade class at St. Charles Borromeo Catholic School in Tacoma when his body started to kick up a storm.  "That had never happened to me before.  I wasn't sure if I was dying or not."

Jacob's mom, Cheryl Wald, said she wasn't thinking the worst at first.

"Jacob has always played competitive sports - he's had aches and pains," she said.  The pediatrician said the same over the phone.  It was probably a pinched nerve.  Cheryl took Jacob home, but when he called across the room for help going to the bathroom, Cheryl started to worry.  She asked him why he couldn't go on his own.  The answer was chilling.  "My legs don't work," Jacob announced.

The Walds had arrived at McChord at the end of 2013.  Lt. Col. Brian Wald served as the deputy operations commander at McChord's 62nd Airlift Wing until he retired last June.  He is now training to fly with Fed Ex.  

Cheryl arrived at the local urgent care and was immediately directed to Mary Bridge Children's Hospital, only a couple miles from the Wald's home in north Tacoma.  For three days the doctors and staff worked for a diagnosis.

"I was mostly confused," Jacob said.  "I wasn't sure what was happening."

Jacob spent those three days groggy, feverish and extremely tired.  His paralysis started at the chest line, therefore his stomach and intestines were tumultuous at best.

Then came the answer: Transverse Myelitis, an inflammation or infection of his spinal cord.  The forecast was bleak.  Transverse Myelitis typically occurs in children ages 10-19, and then in adults ages 30-39, though it can strike at any point in a person's life.  Currently, according to the National Institute of Neurological Disorders and Stroke, 33,000 Americans have some type of disability related to the disease. There is no instant cure for the disorder, and if a patient doesn't see any positive changes in the first three to six months, complete recovery is highly unlikely.  Only 1/3 of those affected have a chance to eventually walk "normally" and experience full use of their bladder functions.

Jacob's disease developed very quickly. "When he still hadn't moved for a couple of days, the neurologist gave him a 25% chance of ever walking again," Cheryl said.

The family was rocked to the core.

"How do you take it when someone tells you your child may never walk again?" she asked.

Cheryl received a partial answer a few days later.

"Our priest came to visit," said Cheryl. "And I told him my biggest fear was that I didn't want this to change him from being the great boy he was. And he told me, ‘You're underestimating who he is if you think this will change him.' He was right. He was an amazing kid before. He's an amazing kid now, with a beautiful heart and spirit."

That's abundantly clear when you sit with Jacob.  He has a prophet's view.

"I had moments of asking God why this was happening to me, but he always has a plan for you," Jacob explained.  "This may not be what I expected for myself, but I know God sees something in me and has his reasons."

As bleak as the diagnosis sounded, it never got the best of Jacob. "I'm not sure we ever told him he might not ever walk again," Cheryl said. "We told him his recovery might take one to two years. We took the punches as they came."

On the 9th night in the hospital, Jacob showed a glimmer of hope. "He moved his toe on his right foot.

"Any movement is a sign that the brain is still talking to the muscles," Cheryl explained.

After two weeks at Mary Bridge, Jacob was transferred to Seattle Children's Hospital to undergo four weeks of intense rehab. While there, one organization provided support for the Wald family, Outdoors For All Foundation out of Seattle. Their goal is to make outdoor activities available for anyone with disabilities. They work with Seattle Children's Hospital and provided Jacob with modified outdoor equipment, allowing him to ride a hand cycle bicycle.

The long road to recover for Jacob was heavily focused on physical recovery of the muscles that had atrophied, focusing on stretches and getting acclimated with moving in and out of a wheelchair.  

"They focused on basically how to live life in a wheelchair, so when he was home we can manage his care," said Cheryl. Meanwhile, adjustments to the bathroom and a ramp were added to the house in preparation for his homecoming.

Jacob, however, ditched the wheelchair as fast as he could.  The minute he could support himself on crutches, he never went back to it.

"When you spend your whole life running around, and then you can't walk, you don't want to be in a wheelchair any longer than you have to," Jacob said.

Jacob's recovery has literally been one step at a time since leaving the hospital at the end of February last year.  "It's kind of weird to do things in therapy that I had done all my life but can't do now," Jacob said.

He graduated from his hospital bed to a wheelchair.  Then with the help of physical therapy two days a week at Children's Federal Way clinic, and daily therapy at home, he has learned to walk again unaided.  He uses crutches at school to limit the possibility of falling, but at home, he refuses to use them.  He walks slow and measured, but each day brings improvement.

"And all of his muscles are receiving a signal from his brain," Cheryl added. "Doctors all agree they don't know what the end looks like but they all believe he's doing well and moving forward."

Jacob isn't confused.  He plans to do whatever it takes to get better.

"I've always had a competitive spirit," he said.  "I want to be the best. I'll work as hard as I have to."

Cheryl said her initial inclination was to treat Jacob like a fragile China doll, but he put the kibosh on that.  "He told me to not worry, what could happen, I break my back and can't walk?"

They both laughed.

Asked what he's gained from the experience, he admits it has brought him closer to his family, including his 16-year-old sister, Morgan.

"We kind of used to fight before, but I'm much closer to her now," Jacob said.  "As a family it's helped us to stick closer together rather than fall apart."

Cheryl agreed.  It has also slowed them down.  Before, with Jacob's sports schedule, they were always on the go.

"We are settling into a new normal now," she added.

As stressful as this experience has been on the Wald family, medical insurance has been one area where they have sighed a breath of relief. "Tricare has been amazing," Cheryl said. "Jacob's medical expenses in 2015 were just under $1 million, but our portion of that for the entire year was only $1,000, due to the standard catastrophic cap. If we had an HMO, our bill would have been 20% or $200,000.  We have never once been denied by Tricare. If Jacob's doctor says he needs it, Tricare gets it done. I cannot emphasize enough what a blessing it has been to not have a financial burden on top of our other worries for Jacob."

Through all of this, Jacob has a greater appreciation for people with disabilities.  "I used to stare at them and see the disability, but not anymore - that's what has changed the most for me."  He said God probably wanted him to learn that, and he's heard how his own situation has been an inspiration to others.

Cheryl has documented his first year of recovery on Youtube at fourwalds.

"This special boy has endured more than most have in a lifetime," she concluded. "I can't say enough about Jacob. He has never once complained or been down on himself. And he says things to me all the time that are insightful like, ‘I think I'm glad this happened to me. On January 6th, God was going to give this disease to someone and he did right by giving it to me. He gave it to someone who could do it.'"

As Lao Tzu stated, "The journey of a thousand miles begins with a single step." Jacob is miles ahead of that.

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