Local Family Adjusting to Daughter’s Rare Chromosomal Disorder

Adelaide Grant has Prader-Willi Syndrome, a rare chromosomal disorder. (Photo: Sam Lott/WHNT News 19)

Adelaide Grant has Prader-Willi Syndrome, a rare chromosomal disorder. (Photo: Sam Lott/WHNT News 19)

HUNTSVILLE, Ala. (WHNT) – Chances are, you have never heard of Prader-Willi Syndrome.  It’s very rare.

To give you perspective, a baby is born with Down Syndrome one of out every 86 births.  Prader-Willi occurs in one of every 15,000 births.

A Huntsville girl, Adelaide Grant, has been diagnosed with Prader-Willi.  She is 27 months old.

Adelaide is a typical little girl.  She loves her toys and she loves to explore.  She loved our camera, too.

Prader-Willi is a rare chromosomal disorder that can affect a child’s ability to learn and grow normally.

The most dramatic component of Prader-Willi, and the symptom that gets the most attention, is an unusually cruel twist.  Almost all with Prader-Willi will deal with waves of gnawing hunger at the same time their body metabolism slows down.

Adelaide’s condition was diagnosed when she was three days old and confirmed at two weeks.

“We Googled it, and it was just bad. The news was bad and the diagnosis was bad,” said Adelaide’s mother, Penni Grant.

Adelaide and her family are learning and living with Prader-Willi one small step at a time.

Watch their story Thursday, September 26 on WHNT News 19 at 10:00 p.m.



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