Jeremiah’s Story

Destined to Soar

At 17 months old, Jeremiah is all smiles as he crawls around, sporting a new big-boy haircut and wearing his favorite Tyrannosaurus T-shirt. He looks up with expressive chocolate-brown eyes as seeking for his mother’s approval.

“He’s cruising on his own,” says Waleska, a stay-at-home mom who runs their day like a pre-school schedule with time designated for physical therapy, as well as lessons in shapes and colors, and nursery rhymes.

Born with Down syndrome (trisomy 21), a development disorder that causes intellectual delays and a host of potential medical issues, Jeremiah’s early challenges included a small heart murmur and bilateral clubbed feet. He currently wears eyeglass to correct astigmatism.

Through Children’s Hospital of Philadelphia (CHOP), Jeremiah receives outpatient orthopedic therapy, among other support services offered through CHOP’s Trisomy 21 program and Early Intervention. Jeremiah recently completed a pool group where Helen Milligan, PT, MPT, a physical therapist who works kids with Down syndrome, worked with him to better develop his oral motor skills — by blowing bubbles — and strengthen his muscle tone — with swim kicks and ball games. Both issues are common challenges for children with Down syndrome.

“He’s a pretty healthy toddler … He’s determined, playful and happy,” Waleska says as she watches him eye up a cardboard delivery box on the floor, and then make his way across the room to play with it.

“There could be a thousand toys and he’ll go for the box every time,” she says with a laugh.

A beautiful boy

Waleska was born with clubfoot herself, and thought she might pass along that trait to her child. She never considered her child would have Down syndrome. Yet, at her 20-week ultrasound, the 25-year-old learned the devastating news. She mourned her stereotypical dreams of having a son who grew up to become a sports star or daughter who would become a ballerina.

“It was such a scary, emotional time. I just kept crying,” she says. With the support of Jeremiah’s father, Sincere, and other family and friends, Waleska not only faced her fears, but realized how lucky she is.

Today, Waleska can’t even begin to imagine life without Jeremiah, her sweet little boy who loves to clap to Twinkle, Twinkle Little Star and Itsy-Bitsy Spider just as much as he enjoys his small menagerie of pets – three dogs, two cats and one fish.

“The first time I saw him I thought he was the most beautiful thing in the world. I fell in love instantly,” recalls Waleska. All her fears faded away, and she said she felt silly even thinking them in the first place.

A short time after giving birth to Jeremiah at the Hospital of the University of Pennsylvania, located next to CHOP, a specialist from CHOP’s Trisomy 21 Program paid Waleska a visit, explained the program and how it can support children with Down syndrome and connect them with the resources they need throughout their lives.

Waleska says she is thankful for the program, the resources it provides, and the “very loving environment” they operate in.

Jeremiah has been receiving care, support and treatment through the Trisomy 21 program since he was 6 months old, including early intervention services such as occupational therapy, physical therapy, and special instruction with a communications expert.

Early on, Waleska decided she would never limit Jeremiah in any way. She introduced him to sign language to help him communicate with her and avoid potential frustration at not being able to tell her what he wanted. But first, she had to teach herself.

The first sign Jeremiah learned was “more,” which he eagerly demonstrated to Waleska when she asked him if he wanted more vanilla ice cream. It was a breakthrough moment because Waleska knew her son was communicating with her.

Jeremiah has since learned more signs, and understands the words in both English and Spanish.
With each significant milestone Jeremiah achieves, Waleska throws a huge family pary to celebrate his accomplishment. His first party when was he learned to sit up on this own and had a dinosaur theme. When he started crawling, his family gathered for a puppy-themed party.

Waleska is already planning the next soiree — when Jeremiah learns to walk. “He’s already showing me he’s getting ready,” his mom says.

Soaring through life

Whenever Jeremiah visits CHOP, he always has pop-in visits from various staff members whose hearts he’s already stolen. And his fan base just keeps growing. ‘He’s just magnetic,” says his mom.

This October will mark the second year Jeremiah and his family are participating in the CHOP Buddy Walk® and Family Fun Day. Last year, his team name was Jeremiah’s Justice League, a nod to some of his dad’s favorite superheroes.

“It is important [to participate] because we want him to be part of a bigger community of people who understand him and his condition,” says Sincere, Jeremiah’s dad. “It’s also helpful for us, as his parents, to see that other kids with Down syndrome are living good lives and achieving their goals. That’s what we want for him, to be successful in his own way.”

Waleska says her long-term goals for Jeremiah are no different than what any mother wants for their child. “I want him to do whatever he wants to do with his life,” she says. “I don’t limit him or have expectations. I just want to see him be himself and I know he will soar.”