Blog

‘We are as grateful as we can be’

Molly

When Molly was born, her parents were not prepared for a Down syndrome diagnosis.

“We hadn’t done any genetic testing, and the initial shock was really hard,” recalled Molly’s father, Bob Bourke. “We love Molly with all our hearts, and our lives have been enriched so much because of her, but it is devastating when you first realize you have a child with special needs.”

It was the support of organizations like the National Association for Down Syndrome (NADS) that helped Bob and his wife, Peg, understand and learn about their daughter’s diagnosis.

“To put it into perspective, at the time, many people thought babies with Down syndrome should be sent to an institution. So when NADS came to the hospital after Molly was born and provided assistance and expertise, it was a huge comfort.”

Then in 1992, Advocate Medical Group’s Adult Down Syndrome Center was founded in partnership with NADS. Molly was a teenager, and she soon became a patient at the Center.

“Dr. Brian Chicoine is the one doctor she’s always loved to visit,” shared Bob. “He’s the most caring, wonderful, smart guy you could ever imagine, and the care he gives his patients is just phenomenal.”

Bob credits Dr. Chicoine, the Center’s director, with being a pioneer in the health and wellness of adults with Down syndrome.

“When Molly was born, her life expectancy was 30-35 years. Today, in large part because of the efforts of Dr. Chicoine and the Center, the life expectancy for individuals with Down syndrome has doubled. What an amazing gift that is to have Molly in our lives longer.”

Molly is now 36 years old. A Special Olympian, she’s independent, active and healthy. Prior to the pandemic, she had a job at a grocery store for 15 years. She lives at Misericordia, a community that cares for people with a wide range of intellectual and developmental disabilities.

“She lives with six other ladies. It’s a very special place,” Bob shared. “And Dr. Chicoine sees patients on campus once a week, so Molly still receives her medical care through the Center.”

Bob and Peg are grateful for the role the Center has played in their lives. They’re also generous supporters.

“We feel so fortunate to have a team of people who do nothing but work with individuals with Down syndrome. That wasn’t the case when Molly was born. Now, we can get all our questions answered by experts in our community who understand her unique needs,” shared Bob. “It’s a huge relief and a huge benefit to have a center like this in our community. We are as grateful as we can be.”

How you can help

The Adult Down Syndrome Center relies on the generosity of donors to ensure people like Molly and their families have access to its unique care, programs and services. Recently, Advocate Charitable Foundation launched a $5.5 million fundraising campaign: At the Center of it all. Funds raised will support patient care, education and research.

“The Center has been a critical part of our lives. What Dr. Chicoine and the Center have done for our family – and so many others – is just incredible. We’re huge fans.”

To support patients like Molly and their families, please consider making a gift today.