Family of Naperville girl with Wolf-Hirschhorn Syndrome aims to raise awareness of rare disease
NAPERVILLE, Ill. (CBS) – Raising a child with special needs can sometimes feel isolating, especially with a diagnosis of a rare disease that not many know about.
The Hill family in Naperville knows that life after the birth of their twins. Their daughter Mary had stolen their hearts and given them a reason to reach out and raise awareness about her condition.
Her mother, Casey Hill, gave CBS 2's Marie Saavedra and introduction.
"She is the most incredible person," said Hill. "She was diagnosed with Wolf-Hirschhorn Syndrome pretty early on into her life.
"She is developmentally disabled as well as intellectually disabled and it causes severe delays in development and in size, hence why she's just like our little peanut."
Hill added that's why for the past three years, the family has celebrated Wolf-Hirschhorn Syndrome Day, which is April 16.
"We've learned about Mary, that she is very interested in music and she loves, loves doing dance parties," Hill said. "So we last year, we did a virtual dance party. Some people were here at our home. Many people obviously couldn't be here so they Zoomed in and everybody dedicated a song and we created a playlist that we shared with our family and friends after the fact. And we all shared a dance party with Mary. And we're doing that again this year."
Hill added, "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain and that really is something our daughter has taught all of our family is that tomorrow's not promised so let's live for today and when things are difficult, I look at my daughter and I remember she's able to smile through, and so we all should."
That's a good reminder for us all. If you'd like to learn more about Wolf-Hirschhorn Syndrome, click here.