The daily activities of many 5-year-olds do not include physical and speech therapies, countless trips to the doctor or traveling for extensive medical procedures once a year. But for Andrew Burkhart, this is all normal.
In September 2010, at age 4, Andrew was diagnosed with a mild case of cerebral palsy, a brain and nervous system disorder.
The diagnosis came after years of doctors only being able to tell his parents, ASU alumni Kellie and Andrew Burkhart, that their son had a developmental delay.
Andrew graduated ASU in 1993 with a criminal justice degree and was on the University wrestling team. He is now a math teacher at Hamilton High School.
Kellie attended and graduated ASU in 1995 with a degree in psychology. After being a mental health therapist and working with children, she now stays at home to care for her son and to hold fundraising events for his procedures.
After six years of trying to have a baby and one miscarriage, Kellie gave birth to Andrew in October 2006.
The couple has raised thousands of dollars through various nonprofit organizations and events to support their son’s expensive treatments.
As an infant, their son Andrew developed torticollis, a condition causing his neck to tilt to one side.
He began going to physical therapy at four months old.
He also had severe gastrointestinal issues, which often caused stomachaches and gave him no chance at potty-training.
Andrew had trouble speaking and began speech therapy at a year and a half.
He was nearly 3 years old before he was able to speak, but he was able to write many words to communicate his thoughts.
“We’re blessed that he was given other gifts,” Kellie said. “He’s very, very smart.”
Since his diagnosis with cerebral palsy, which came one month before his fourth birthday, Andrew has been on an extensive journey of improvements.
“We set a path and went on that path to help our son get better,” Andrew’s dad said.
Right away, Andrew’s parents took him to a chiropractor who specialized in craniopathy. The specialist works to get neurological liquids flowing properly through the body by physical touch, and Andrew’s parents saw improvements with his walking within two months.
However, they also knew that to see further improvements, larger treatments, including umbilical cord stem cell therapy and hyperbaric oxygen therapy, were required.
Umbilical cord stem cell therapy takes cells, which would otherwise be thrown away, from a healthy baby, and places them in Andrew’s body through an IV.
During hyperbaric oxygen therapy, Andrew received oxygen to stimulate tissue growth and support cell repair in the brain.
“They’ve proven that the hyperbaric oxygen treatments in conjunction with the stem cells helps cure CP,” Kellie said. “But obviously there’s no guarantee.”
The treatments range from $10,000 to $12,000 and are out-of-pocket expenses, Kellie said.
“Andrew is on (Arizona Health Care Cost Containment System),” she said. “He has free medical (care) from the government, but he was getting worse, and they won’t pay for anything that helps.”
Andrew’s dad works three jobs, but his mom had to leave her job to take care of her son full-time. She started working on fundraising for his treatments.
They held events such as car washes and silent auctions, ultimately raising enough money to fund the trips to California and Mexico, where the procedures took place.
In June 2011, the Burkhart family went to California for what Andrew called their “Big Summer Adventure.”
Andrew received 17 hyperbaric oxygen treatments and the umbilical cord stem cell treatment during this trip.
Because the Food and Drug Administration does not sanction umbilical cord stem cell treatment, the family had to drive to Tijuana, Mexico for the procedure.
Within the first month, Andrew’s parents noticed huge improvements, including more movement in his left arm, which used to hang by his side.
His gastrointestinal functioning also improved, which enabled him to be potty trained, a huge step for the 5-year-old.
“As soon as we went, we wanted to go again,” Kellie said.
With fundraising efforts including tax-deductible donations accepted through Fans Across America Charitable Foundation, the Burkharts raised enough to go to California for a second round of treatments this June. This time, he received a bone marrow stem cell procedure, where the cells were taken from his own hip.
Again, his parents noticed a significant difference in his strength after this procedure, particularly in his left side. They still continue to see improvements, Kellie said.
“Andrew now and Andrew two years ago are two very different people,” she said.
Despite the cards the Burkhart family was dealt, they said they continue to feel very blessed.
Andrew’s medical bill this past year was $12,000 for treatments alone.
Through donations, monetary and otherwise, the Burkharts have been able to get their son the treatments he needed.
Andrew’s dad said they have to enjoy what’s right in front of them, such as their family and strong support system.
“You have to act the way you want to feel,” he said.
Although Andrew has had to go through several procedures, he doesn’t notice that he is unable to do certain things, and he doesn’t compare himself to other kids, his dad said.
“Now it’s more, ‘Watch what I can do; I can stand on my left leg,’” he said.
Andrew is continuing to strengthen through swimming and tumbling classes at Aspire Kids Sports Center, which gave him a scholarship for the year.
Kellie said Andrew has always been a sweet, curious and funny kid who cares about everyone.
“(My one wish is) for sick kids to get better,” Andrew said.
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