heterotaxy1SPRINGFIELD- Hallie is a beautiful 9 year old girl. She loves fashion and spends her time drawing her own fashion line. One day, Hallie would like to learn how to sew so she can make her designs a reality.

However, unlike most children, Hallie spends a lot of time with doctors and in hospitals because she was born with Heterotaxy Syndrome.

Heterotaxy is a disorder that in certain organs forming on the opposite side of the body. For example, instead of the heart normally forming on the left side of the chest, it will be located on the right side.

State Senator Scott Bennett (D-Champaign) passed Senate Resolution 436 to declare May 4 Heterotaxy Awareness Day in Illinois.

“Heterotaxy is a fairly unknown disorder. It’s important to raise awareness to provide children like Hallie with the best possible treatment,” said Bennett. “If we want to continue to find innovative methods of care, we need to educate as many medical professionals and people as possible.”

For every 1,000,000 babies born, 4 of them will have Heterotaxy. Often those diagnosed spend their lives with a team of doctors to stay in reasonable health.  Bennett’s daughter, Emma was born with a mild form of Heterotaxy.

“My wife and I are lucky Emma is in great health; however, there are children diagnosed with Heterotaxy, who spend more time in a hospital than any child should have to in order to receive treatment and stay healthy,” said Bennett.

Babies with Heterotaxy are usually first identified because they have structural problems with their hearts or livers. It has been known to affect development of the heart, liver, lungs, intestines and spleen.

SR 436 passed the Senate with bipartisan support.

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