Evan wears two hats at Connecticut Children’s. First and foremost, he is a grateful dad and second, he runs the Raytheon Technologies Family Resource Center, located on the second floor of the main hospital. Ellie, Evan’s oldest daughter, has an ongoing relationship with Connecticut Children’s and will continue for years to come. Ellie was born with Down syndrome and several related conditions that affect her overall health. Her journey will always involve a variety of specialties and therapies, and Ellie takes it all in stride with a smile and an infectious laugh.
Ellie receives care in the divisions of Cardiology, Endocrinology, Gastroenterology, Ophthalmology and a few other divisions. She was born with a heart defect, which means she has to be monitored by cardiology regularly though, thankfully, it doesn’t require any activity restrictions. Ellie also has a thyroid condition that is kept in check through continual blood testing and medication. In addition, she regularly works with a physical therapist to help build strength, as patients with Down syndrome often experience low muscle tone. And if those weren’t enough, Ellie receives speech therapy and occupational therapy. Her medical treatments ebb and flow as she grows and develops.
One of Ellie’s favorite days is when her dad joins her at school and they read a book to the class about Down syndrome. “I explain that Ellie has ‘dislikes’ and ‘likes’ just like everyone else and feelings just like everyone else,” says Evan. “Her disability doesn’t define her. I want people to talk about Down syndrome and feel comfortable talking about it.”
Ellie loves school. Her Individualized Educational Plan (IEP), provides the supports she needs to be the best version of herself. She works on achieving little and big milestones on a daily basis. At the moment, she loves playing baseball, being silly and telling jokes. Ellie loves the beach and swimming in the ocean, as well as playing with her younger brother and sister.
Evan says, “One child with Down syndrome is one child with Down syndrome.” Like any other diagnosis, there is a wide range of capabilities. “When people see Ellie, they automatically assume certain things, one being that our life won’t be short of hugs. Ellie loves to gives hugs and is good at it.” He continues, “But not all kids with Down syndrome like to give hugs.”
Evan says with a laugh, “Ellie is a little sassy at the moment. There is so much that defines her, but not Down syndrome.”
When Evan wears his Connecticut Children’s hat, his goal at the Family Resource Center is to improve the well-being of patients and families through innovative programs, events and education. Evan understands first-hand as a dad that some children deal with ongoing medical care and require multiple visits to the hospital. Just like he does for Ellie, Evan looks to create engaging and fun opportunities so kids can be kids and feel a little less apprehensive when visiting the hospital. Ellie’s journey will be long and continual and why not make it a little more fun along the way.