From double the setbacks, a singular strength emerges

Caleb Thurman with his mom Charice Fort

Caleb Thurman with his mom Charice Fort

Every time 13-year-old Caleb Thurman smiles, you can catch a glimpse of it. A subtle wisdom, a seasoned understanding of what it’s like to face life’s challenges head on – day in and day out – and come out the victor.

“He’s a wonderful person,” says his mother, Charice Fort. “He’s a young man well beyond his years because of all the things he’s had to endure. He looks the picture of health, but many people don’t know what’s going on behind the scenes.”

The last several years have been trying ones for Caleb and Charice. Blindsided by two unexpected chronic disorders, they’ve faced multiple hospital stays, ongoing medical treatment and a change in life as they knew it. However, Charice’s strength coupled with Caleb’s determination demonstrates that this pair has the fortitude to overcome.

Two chronic diagnoses

In 2007, Caleb became extremely sick, complaining of stomach pain. His pediatrician initially thought it might be a virus. After a week during which Caleb only got worse, he underwent several tests and the results made his doctor grow increasingly concerned.

“My doctor looked at me and said, ‘I’m starting to get worried,’” says Charice. “When a physician says that, it sends you into a tailspin. My grandmother died in 2003 of colon cancer, so that fear took over instantly.”

Caleb was referred to pediatric gastroenterologist Emory Collins, MD. After performing several more tests, Dr. Collins concluded that Caleb had Crohn’s disease – a chronic inflammatory disease of the gastrointestinal tract that’s characterized by cramping, loss of appetite and weight, and abscesses and scarring, among other things. It’s an autoimmune condition with no known cure.

“He underwent every regimen possible to get him feeling better,” says Charice. “He was initially on steroids. When he went off of them, he got so sick that he was in and out of the hospital. He became a hard case to control.”

Caleb during a hydrotherapy session

Caleb during a hydrotherapy session

At the same time as his initial sickness, Caleb started experience pain and swelling in his joints, particularly in his lower body. After visiting Mary Bratovich Toth, MD, director of rheumatology at Akron Children’s, Caleb received another diagnosis: he had juvenile rheumatoid arthritis, and would also soon be dealing with the difficulties of psoriasis.

“It’s common for a child diagnosed with one autoimmune disorder to develop another,” says Dr. Toth. “In Caleb’s case, he developed arthritis because of his Crohn’s disease.”

To help treat both conditions, Caleb began undergoing IV infusion therapy.

“When you treat one condition, the other condition gets better, as well,” says Dr. Toth. “In this type of treatment, the patient receives medication both orally and through an IV that suppresses the immune system, telling it to stop attacking the intestines, as well as the joints.”

So Caleb and Charice began the long process on what was hopefully a road to improved health.

Overcoming the obstacles

Every six weeks for the past five years, Caleb visits Akron Children’s Hospital to undergo IV therapy.

“His condition has markedly improved,” says Dr. Toth. “He still has some active bouts of the disease, and a side effect of the medication has led him to contract psoriasis, which he uses cream medications to treat. However, both his Crohn’s and arthritis are doing much better.”

Because of the weakness in his legs from the arthritis, Caleb wears leg braces to keep his ankles and knees straight. He also frequently visits the hospital for physical therapy and hydrotherapy.

“I tell my son that yes, there is sickness in life, but his sickness is not a crutch,” said Charice. “You have to get up and keep moving.”

Caleb has taken his mom’s advice to heart. He loves baseball, and spent this past summer playing in the West Akron Baseball League. He also enjoys swimming and belongs to a local bowling league. On the weekends, he runs the audio visual booth at his church. This year, as an 8th grader at Akron’s Litchfield Middle School, he works in the office, plays clarinet in band and sings in the school choir.

Throughout their journey, Caleb and Charice have relied on the support of friends, their church family and the team at Akron Children’s Hospital.

“Kids come first at Akron Children’s – I can’t say enough about Dr. Toth and the rest of the hospital staff,” says Charice. “I have a phenomenal support system. There’s a multitude of people who care for, and about, me and my child. Everyone is so caring, kind and personable – from doctors and nurses to therapists and volunteers.”

Caleb and Charice meet (L-R) Bernett Williams, VP for external affairs, Bill Considine, president and CEO, and Charlie Solley, government relations director

Caleb and Charice meet (L-R) Bernett Williams, VP for external affairs, Bill Considine, president and CEO, and Charlie Solley, government relations director

Becoming a voice for others

Their journey took an unexpected turn in June. Nominated by Dr. Toth and selected by the hospital, Charice and Caleb represented Akron Children’s and all its patients during the Children’s Hospital Association’s annual “Speak Now for Kids Family Advocacy Day” in Washington, D.C.

The trip gives legislators a chance to meet people affected by healthcare policy decisions. Issues that impact children’s hospitals and their patients include cuts to programs that fund medical education to train future doctors, ongoing concerns about drug shortages, and funding for safety-net programs like Medicaid and the Ohio Department of Health’s Bureau of Children with Medical Handicaps (BCMH) – a program that has brought Charice immense relief.

“I’m a single, full-time working mom of a special needs child,” says Charice. “I have good private insurance, but I need help filling in the gaps. BCMH covers all of Caleb’s medical costs above what my insurance covers. I went to D.C. to be a voice for other working parents and other parents of special needs children, letting our lawmakers know that this funding needs to be kept in place.”

During his time in D.C., Caleb got to walk the halls of Capitol Hill, and meet Congresswoman Nancy Pelosi, Rep. Tim Ryan, and other lawmakers while representing the hospital.

“It was an eye-opening experience for both of us,” says Charice. “I do believe one day Caleb will make it to D.C. himself and become part of the movers and shakers of the world. He’s just that kind of person.”

As Caleb and Charice continue on their journey, they’re grateful for the care and support they receive from Akron Children’s Hospital.

“Akron Children’s loves your child as if they were their own,” says Charice. “There’s no doubt that the hospital provides the highest quality care in the region. As a parent, you always want to do what’s best for your child. And one of the best things I ever did was take my son to Akron Children’s Hospital.”

From setbacks, strength emerges
Publication: Children's Progress
Issue: Fall

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