Special Assignment

Family thankful for every moment with child fighting many battles

CREATED Jan. 29, 2013

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MILWAUKEE - She's a little girl who's already lived a lifetime of challenges. Hannah was born with Down Syndrome, and that's just the beginning.

In her two short years on this Earth, Hannah hiegel has already spent more time in the hospital than most of us will in our lives. Her battles are emotionally inspiring, but also medically revealing.

Rebecca Hiegel knew from day one that her daughter Hannah was special.

“I knew right away, immediately after she was born, because she came out like this, instead of nice and tight,” said Hiegel. “I knew right away that she had down syndrome.”

Most people associate Down Syndrome with cognitive disorders, but for little Hannah, there were physical problems as well. This included digestive trouble and a heart condition. Hannah's first surgery came at just two weeks old.

“I didn't dream for my daughter to have obstacles,” said Hiegel. “You do not want to have any of your children to have obstacles in front of them.”

Obstacles that would challenge the entire family. Paul and Rebecca already had two boys. They knew raising a special needs child would be challenging, but they hadn't counted on cancer.

“Acute Myloid Leukemia, I believe, said Hiegel. “And it's one of two types of childhood leukemias.”

Doctor David Smith specializes in special needs patients at children's hospital of Wisconsin. Doctors don't know why, but they do know children with Down Syndrome are at a higher risk for leukemia, much higher.

“It's about 10 to 20 times greater than in the general population. So that's a significant increase,” said Smith.

But something else significant about Down Syndrome children was finally a break for this family. The very thing that made Hannah so much more likely to get cancer, also made her more likely to beat it.

“They told me that Hannah was very fortunate in that she had down syndrome,” said Hiegel.

Fortunate that she had down syndrome. So much so that her chances of successful treatment are 80 to 90 percent.

Hannah starts 2013 with her cancer in remission. So many challenges remain for Hannah, for this family, but don't think they'd have it any other way.

“I don't want people to think of Down Syndrome as a burden on them, on our family,” said Hiegel. “Hannah is wonderful. I would not change her. I would not take away her cancer. Would not take away her heart defect. Would not take away her tummy surgery. She's here for a reason. She's teaching us all something, and she's amazing.”

Doctors are still studying the link between Down Syndrome and leukemia. What they learn could u;timately lead to better treatment for anyone who faces that battle.