KMBC 9: Children's Mercy delivers clarity for family dealt rare disease diagnosis
By Donna Pitman
Alli Kisner had the best pregnancy.
She and her husband, Ben, were ready to be parents, even if that was a few weeks early.
“We had the twins at 34 weeks. They spent ten days in the NICU. Then, we had two healthy babies heading home.” Hudson and Hailee, were dreams come true and the couple couldn’t ask for more.
A year and a half after they were born, they got something they never would have asked for: A rare disease diagnosis for Hailee.
“We realized she was aspirating,” Alli recalls.
They spent ten days at Children’s Mercy Hospital where Hailee was tested for geneticabnormalities. That’s when they discovered she has Trisomy 9P, a partial duplication of the ninth chromosome. Only 149 other people in the world have been diagnosed with the condition.
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