Two moms, two daughters and a bond over a shared diagnosis

Julia Grace and Lily Alice, who both have Down syndrome pose in a field of tulips
Julia Grace, left, and Lily Alice [PHOTO: HARVEST HILL PHOTOGRAPHY]

When Kristen and Ella met on an online support group for moms of babies born with Down syndrome, they made an instant connection. The two have been friends ever since. “The first time I met Ella, it felt like I knew her my whole life,” says Kristen, mom to 2-year-old Lily Alice. “It was a bond that felt like family.”

The girls’ friendship blossomed not only out of their moms’ support of one another, but also out of their shared love of bows and their distinct, complimentary personalities. Julia Grace is cautious and careful while Lily Alice is ready to take on the world at a moment’s notice.

“Julia Grace is going to make sure Lily Alice doesn’t get into too much trouble and Lily Alice is going to make sure Julia Grace has plenty of adventures,” says Ella, mom to 2-year-old Julia Grace.

Focusing on progress

Both Lily Alice and Julia Grace are patients of the Down Syndrome Clinic at Boston Children’s Hospital. Dr. Emily Davidson, Angela Lombardo and the rest of the team help Kristen and Ella focus on their daughters’ progress rather than their delays. The clinic has served as a haven of positivity and encouragement as Lily Alice and Julia Grace reach milestones month after month.

Julia Grace and Lily Alice, who have Down syndrome, sit together on a bench
Julia Grace and Lily Alice at age 1

“When I’m at the Down Syndrome Clinic, I always say to myself, ‘They see Lily’s potential,’” says Kristen. “Every time I leave to go home, I get choked up because I’m reminded that those people are in our corner.”

‘A trip to Holland’

As Kristen and Ella have grown as parents of children with Down syndrome, they’ve both found a connection with the essay, “Welcome to Holland,” by Emily Perl Kingsley. The essay seeks to explain the feelings parents may experience after finding out their child has special needs.

For Kristen and Ella, though, there’s one part of the essay that doesn’t resonate. “Neither of us feels a deep, dark sadness in our souls that will never ever go away,” says Ella. “These girls are so joyful to us and so joyful in the world that to have that sadness would be such a disservice to them. I wish there were more Lily Alices and Julia Graces in the world because they bring out the best in people.”

An unbreakable support system

Above all, Kristen and Ella are grateful every day for the support they provide each other and the support their girls will give to each other as they grow. “We’ve had scary days, but we got through them together and we always remind each other that we’ve been through worse,” says Kristen. “Ella will tell me, ‘Lily Alice is tough, we’ve been down this road before’ and that’s all I need to hear to feel better.”

Julia Grace and Lily Alice, who both have Down syndrome, pose with their moms

Inspired to help others find this same support, Ella founded a non-profit organization called Julia’s Way, and Kristen sits on the board. The organization provides resources and support to parents with Down syndrome to help them reimagine the endless possibilities for their child, regardless of their diagnosis.

“The two of us together, wanting to change the world for our children — watch out, world,” laughs Kristen.

Changing the world is exactly what Kristen and Ella are doing — by reminding us all how strong the power of friendship really is.

Learn more about the Down Syndrome Program.