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October 9, 2012

Transplant waiting game

7-year-old hopes to get call for new heart

TERRE HAUTE — Late Monday afternoon, 7-year-old Katelyn Newell enjoyed a game of Uno with five brothers, and they didn’t give her too many breaks.

But the little girl in need of a heart transplant can hold her own. “She can make herself heard,” said Katelyn’s grandmother, Monica Trotter.

Katelyn, a Deming Elementary second-grader, has been on a list to receive a heart transplant for nearly six weeks, and the page could come at any time.

She suffers from bradycardia, in which her heart beats very slowly. Her coronary arteries are not developing as they should, and her doctors at Riley have determined she needs a heart transplant.

Her mother, Robin Newell, constantly has the pager with her. That page “can’t come fast enough,” Newell said. The stress “is exhausting.”

While family members try to enjoy themselves, “A lot of our nerves are stretched tight,” Trotter said. “We kind of have to remember within the family we can’t get upset with each other.”

While family members are eager for Katelyn to receive her new heart, they are very much aware that another family will suffer in order for that transplant to take place.

“We realize what it means for Katelyn to get a new heart. It’s means a second chance for her,” Trotter said. “But we also realize a family will be suffering greatly at the loss of a child.”

Knowing that others will suffer “is very sad for us,” said Scott Moody, Katelyn’s dad.

The blended family consists of seven sons and one little girl — Katelyn — and they know how they would feel if they lost one of their children, Moody said.

Katelyn, who has a pacemaker, continues to go to school each day, but she is in a wheelchair there because she tires easily. She also has a “rest time” during the school day. She is weak and turns blue constantly.

The 7-year-old went to the doctor last week, and there are no dramatic changes in her condition. Her heart is functioning about the same as it did in August.

Later this month, she will go to Riley for about five days to receive IV medication that should make her feel better and more energetic. Doctors also will have to monitor her for side effects.

If it works, she’ll return every few weeks for the IV medication until the transplant.

In the meantime, Trotter is working with the Children’s Organ Transplant Association to begin fundraising efforts. COTA is national charity based in Bloomington, dedicated to organizing and guiding communities in raising funds for transplant-related expenses.

The cost of a transplant often exceeds $500,000, and many transplant families are unable to shoulder that kind of financial burden.

While Katelyn has insurance, it will not cover all costs Terre Haute volunteers are working to raise an estimated $30,000.

Trotter is coordinating fundraising efforts on behalf of her grand-daughter, and Deming Principal Susan Mardis will oversee fundraising efforts at the school. Both have begun planning for events, and volunteers are welcome. At Deming, the Student Council will be involved.

Donations go directly to COTA, which is a nonprofit 501(c)(3) organization; donations are tax deductible, said Lyndsi Bennett, COTA campaign specialist.

The Newells will be reimbursed for their expenses.

COTA has worked with 2,000 children in need of transplants since it began in 1986 and it helps between 150 to 200 new families each year, Bennett said. All funds raised are used for patients’ transplant-related expenses that can include out-of-pocket medical expenses but also living expenses that might include travel and food.

The Newells also may need assistance with anti-rejection medication.

Katelyn’s been having a lot of anxiety lately, her family says. “I think the longer it goes on, the more she is starting to understand what is really going on,” Moody said.

No matter how much pain Katelyn is in, “She always has a smile,” Moody said, although “we see the wicked side of her every once-in-a-while.”

 For the family, the waiting continues, and they stay close to home waiting for a life-saving page.

Sue Loughlin can be reached at 812-231-4235 or sue.loughlin@tribstar.com.

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