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It’s champions honoring champions.
One group fought for a Super Bowl championship. Another group is fighting a harder and longer battle.
The fighting spirit, courage and strength exhibited by seven Hoosier children got them field access during an Indianapolis Colts game and a firm handshake from Colts quarterback Peyton Manning. They’ll garner more recognition today when they’re honored as Riley Champions at an Indianapolis luncheon presented by the Colts.
They’re Riley Hospital for Children’s class of 2009.
The accolades and experiences are nice, but these children each had a long road leading up to today’s events and have an even longer road as they battle their illnesses.
Eleven-year-old Jac’Quel Jones of Fort Wayne is a regular fixture at Riley, traveling three times each week for dialysis.
To monitor her autoimmune hepatitis, Sarah Heimann, 17, of Monroeville, has to visit her Riley doctors at least once a month.
These are their stories.
The tube can first be felt just above Jac’Quel Jones’ collarbone, underneath his skin before it connects to the artery in his neck. It runs down his chest and is covered by a puffy white bandage.
It’s easy access for more tubes to connect to the 11-year-old when he travels to Riley Hospital for Children three times a week for dialysis. The blood flows out of his body, is cleaned and is put back.
The tubes are the evidence of 87 surgeries. Jac’Quel’s kidneys didn’t totally form when he was born, resembling shriveled prunes with cysts on the outside. He was born on a Wednesday, and his mother, Tiffannee Leach, was told Jac’Quel wouldn’t live to see Saturday.
He has polycystic kidney disease, and though he had a kidney transplant when he was 3 years old, Jac’Quel’s body rejected the organ, and it had to be removed. Jac’Quel will be on dialysis the rest of his life unless he gets another kidney.
The disease has left him small for his age, 4 feet and about 60 pounds. Most people think Jac’Quel is 5 or 6 years old. His brother is only three years older and is more than 2 feet taller and weighs about 200 pounds more. But it’s his smile everybody talks about.
The Cornerstone College Preparatory School student likes playing video games, says he’s good at math and loves watching the Colts. Jac’Quel said Manning hurt his hand when he shook it on the field.
“I’m glad that he’s getting to experience certain things because he’s been through so much,” his mother said. “Ninety-nine point nine percent of his life has been in the hospital. So for him to experience the things he is experiencing is a blessing. I hate to see him suffer. He’s suffered so much.
“Being a mom, how do you fix that? You can’t, but just be there for him and love him like he’s a normal person. In my eyes he’s normal, he just has a tube in his chest.”
Sarah Heimann rested her chin on her hands as she stuck her tongue out at her dad.
Tears ran down Doug Heimann’s face as he talked about his 17-year-old daughter and the strength she has exhibited over the past two years.
Sarah’s mom, Lisa Heimann, was long gone by this point, her eyes red and watery from the time Doug started his speech.
“You’re special, Sarah; really, you are,” Doug said. “If it was me, and I was in your shoes, … I wouldn’t want to go to school, wouldn’t care about nothing. I’d stay in my bed. Forget it.”
“Well, when you’re sick, you’re a baby,” said Sarah, a senior at Heritage Junior-Senior High School in Monroeville.
Being in Sarah’s shoes means taking nine medications multiple times a day. It meant gaining 30 to 40 pounds in two months because of the medications. It also means her immune system is attacking her liver.
By the time doctors discovered Sarah’s immune system was waging war, 90 percent of her liver was damaged.
Sarah was diagnosed with autoimmune hepatitis. The Heimanns started the process of getting Sarah on the transplant list but decided against it when her body started responding to the medication.
She heads to Riley Hospital for Children once or twice a month for checkups. Sarah will probably have the disease the rest of her life.
Her immune system is not fighting an aggressive battle against her liver now, but the organ is still under a mild stage of attack.
Sarah will have to decide whether she wants to continue taking all of the medications, some of which have long-term side effects, or get a liver transplant.
In the meantime, Sarah maintains a matter-of-fact demeanor and is continuing her work as a member of Cornerstone Youth Center’s board of directors and editor of Heritage’s yearbook. She’s also eagerly awaiting to hear whether she has been accepted to Ball State University, something her dad’s not worried about.
Doug remembers Sarah’s attitude after being admitted to Lutheran Hospital upon being diagnosed.
“She wasn’t concerned about her well-being. She just didn’t want her friends to be worried and upset,” Doug said. “And that’s just the kind of gal she is. She looks out for others before she puts herself out there. She makes us proud.”
