Boy’s Brave Journey Aided by Flights
First it was a car accident resulting in whiplash. Then, an athletic injury to the kneecap. Those two injuries coming in close proximity in 2013 resulted in “the perfect storm” in her son Tommy’s life, according to his mother, Susan. Now 13, Tommy developed the horror of CRPS—Complex Regional Pain Syndrome—defined as “a progressive disease of the central nervous system ranked as the most painful form of chronic pain that exists today.” The diagnosis was slow in coming—six months after the injuries— and the delay has meant remission or reversal of the condition “becomes nearly impossible,” Susan said. He’s unable to attend school, walk, or play with his friends, gasps in “lightning bolts” of pain every few seconds and screams when he is moved in his wheelchair.
Susan took her son to the University of California-Davis Medical Center and Stanford with hopes of finding a successful therapy, but the nerve blocks the doctors applied were ineffective. “The condition is not mediated in the affected limb,” she explained, but is “a malfunction of the central nervous system and brain,” something not understood by
Susan went to work researching physicians experienced in the complex disease, CRPS, and found a doctor in Rhode Island whose thorough examination led to a second diagnosis of a connective tissue disorder and two other conditions. Mercy Medical Angels provided the flight, and later, a trip to the Florida Spine Institute where at long last, Tommy found relief for his agony under the care of renowned specialist Dr. Ashraf Hanna, who uses an unconventional but effective treatment.
“We began outpatient IV-ketamine treatment and continued without any change for nine days. During the middle of the night on the 10th day, Tommy woke me up at 1:00 a.m. and told me his pain was gone. Gone!” They talked for a long time and began to realize the world that would again open up—that Tommy “could wear pants, take a shower, put a blanket on at night, see his friends . . . go to school.” That morning, “Tommy slowly walked into Dr. Hanna’s office with only the help of my hand.” But in order to reset the brain and break the pain pattern, Dr. Hanna said, “it may take many 20-30 day treatment sessions before he is functional again.”
“None of this was covered by insurance,” said Susan, a single mom and Tommy’s full-time caregiver. She also has a son named David, who’s 11½ .
She learned about MMA through an online support group and said, “the service has been without a doubt the only reason my child is getting the treatment he so desperately needs. As a single parent, not working and surrounded by unsupportive local medical practitioners, MMA afforded my son the opportunity to literally save his life.” MMA recently provided a second flight to Florida, where Tommy is continuing treatment—which also includes hyperbaric oxygen therapy and trans-cranial magnetic therapy. His school held a fundraiser for him in March to add to the online fundraising created by his mother (gofundme.com/tommysbravejourney).
Besides art and music, “Tommy loves to garden and spend time outdoors . . . he’s also a genius and loves knowledge, especially any type of science or math.” His illness is “painful, all consuming,” he said, and he suffers from nausea that makes it hard to eat. But in spite of this, the courageous boy has an outward focus: “I want people to remember that everyone is struggling with something that no one can see so we should all be kind. Always.”