Not Letting ITP Get in Her Way

Ayla C. knows how to live a rich life with ITP—and she’s only 10 years old.

By Michelle Ponte

It’s the middle of the school week and Ayla C.’s nose has been bleeding throughout the day. But the 10-year-old fifth grader who has had ITP since age 3 ½ is sticking it out. “She didn’t want to miss school, so she spent all day holding tissues,” says her father, Jay. “I love school,” chimes in Ayla, who lives in Arvada, CO, and counts reading, writing and Greek mythology among her favorite subjects.

While Ayla’s parents are determined to help her keep a normal everyday routine, the unpredictable nature of the disease has been challenging. For instance, Ayla recently spent eight days in the hospital due to low platelet counts and received an ITP treatment. As a result, her platelets shot up to 800,000 (a normal platelet count is 150,000 to 400,000) and the family felt it was safe to take her on a special outing. “Sunday we went on a roller coaster at an amusement park,” says Jay. “Then on Monday she had a mouthful of blood blisters, which means she went down to 3,000 platelets.”

Ayla has been hospitalized multiple times over the years due to low platelet counts and bleeding. She has tried several treatments and had her spleen removed. The most effective treatment, so far, is corticosteroids, says Jay.

Champion your cause

Despite her health challenges, Ayla stays happily busy. “After school, I do swimming, jazz, golf, piano and violin.” Last year, she served as the 2010 Denver Children’s Hospital Ambassador. In 2011, she was appointed the Children's Miracle Network Colorado Champion, where she speaks to large corporations and at charity events to promote ITP awareness. “I enjoy telling them about everything that has happened with ITP and me and what I do to help support Children’s Hospital,” says Ayla.

Ultimately, says Jay, “Kids are amazingly resilient. In seven years, I’ve never heard her once say ‘Why me?’” But, we let Ayla know that ITP doesn’t define her, he adds. “From the beginning, we have said ITP is what she has, and not who she is.”

Here, Ayla and Jay, discuss everyday life with ITP.

HM: How do you stay safe during your activities?

Ayla: I have to wear a helmet at gym and at recess. I can still play on the playground. I like to swing mostly.
Jay: She also has railings on the bed at home. As she has gotten older, we have given her more control.

HM: What do you tell kids and teachers about ITP?

Ayla: I tell them what ITP is and what platelets are, and what I can and can’t do.
Jay: We have been proactive with our school. In the first grade, Ayla had low platelet counts and had to wear a helmet. Kids made fun of her. So we went to all of her classes with her and explained to the kids what ITP was and that it wasn’t contagious.

HM: How do you support other kids who have ITP?

Ayla: [I tell them] just don’t give up and to handle it one day at a time.
Jay: Her strength is being able to talk to a scared kid and say, “It isn’t fun, but you will be fine and you won’t be alone.”

HM: Jay, what do parents need to discuss with their kids who have ITP?
I started and continue to be the facilitator of the Platelet Disorder Support Association (PDSA) teleconference support group for parents of children with ITP. One woman I met told me to ask my child how she feels about her ITP. I had never asked Ayla that question. I learned that while we’re worried about life and death stuff, she felt weird that she had to wear a helmet.

Published December 2011

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