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Life’s miracles are not defined by Down syndrome

Kyle Moroney • Jul 21, 2015 at 11:12 AM

“She does everything our 8-year-old does — it just took her a little longer,” said their father, Kyle Brill. “We expose her to as many things as we can.”

While there are different types of Down syndrome, Trisomy 21 is the most common cause of this genetic condition, according to the Down Syndrome Association of West Michigan. The mutation of Chromosome 21 produces an extra copy of the chromosome (instead of two copies, there are three).  The third copy is what leads to the most common-associated health problems —  such as heart valve defects, low-muscle tone, propensity toward hypothyroidism, hearing problems, poor vision, enlarged tongue, high-pain tolerance, sleep apnea and celiac disease.

“She just has a bit of a disability,” a sincere Peyton said of Chloe. “She’s still going to look like us and play with us, but she just has a little bit of disability.”

Roxanne Brill, now 33, did not opt for the common “triple screen” blood test that can detect Down syndrome in the womb when she was pregnant with Chloe. She and her husband said they were overwhelmed when the doctor told them the day after Chloe was born in November 2006 that he thought she might have Down syndrome.

“I was in complete shock when he came in,” Roxanne said. “Once he said those words — ‘I think your child has Down syndrome’ — everything was a blur.”

A week later, blood test results confirmed the doctor’s suspicion.

“You go through this mourning — mourning the ‘normal’ child you would have had,” Roxanne said. “But now you have a whole new path that you have to prepare for. It’s a whole new world.”

The Brills said they had no one to turn to for information about the condition — as they did not know anyone with Down syndrome. They quickly latched on to the Down Syndrome Association of West Michigan for help.

“You realize it is what it is, and you don’t have time to dwell on it,” Kyle said. “You need to move ahead and do what’s best for your kid.”

Raising awareness

October has become a widely known awareness month. In addition to breast cancer and domestic violence, it is also Down Syndrome Awareness Month.

Down syndrome occurs in one in every 691 live births, representing nearly 5,000 births a year in the U.S., according to the National Association for Down Syndrome.

Eighty percent of children born with Down syndrome are born to women under 35 years old, according to NADS. However, the risk of giving birth to a child with Down syndrome increases with the age of the mother.

Various tests can detect Down syndrome during a woman’s pregnancy, including sonograms and blood tests, as well as diagnostic testing. A new prenatal blood test was launched earlier this month that allows pregnant mothers to screen for Down syndrome as early as 10 weeks of pregnancy, should they choose the screening. 

“We still don’t know why it happens,” said Melissa Werkman, executive director of the Down Syndrome Association of West Michigan.

It is known that the error in cell division is caused during conception and is not related to anything the mother does during pregnancy, she said.

The West Michigan association provides varied resources and tools that help parents cope with the myriad of questions they have when they hear the words “Down syndrome” associated with their child. Before leaving the hospital, the Grand Rapids-based organization gives families with a Down syndrome baby a binder full of information about the condition, and outreach opportunities and paperback books with inspirational stories about raising a child with Down syndrome. There are also social media networks, blogs and support networks throughout West Michigan — including mom’s coffee dates, playgroups for the kids and nights outs for fathers.

“We give them time to process everything and then they can reach out to us when they’re ready,” Werkman said. “... Hands down, we consistently hear that, first and foremost, parents want to be connected with other parents.”

An unbreakable bond

Norton Shores parents Jennifer and Matt Sunderlin said meeting other families with Down syndrome children has been a blessing to help them through the trying and triumphant times after their third child, Abby, was born 19 months ago.

“There’s an indescribable family bond you develop with these women,” said Jennifer, 30, of two newly formed cross-country friendships with moms of Down syndrome children. “We lean on each other when we’re going through rough times and we celebrate when we’re not.”

Jennifer and Abby flew to California last March to meet these new friends — one from California and the other from Colorado — who she had met through Facebook.

Like the Brills, the Sunderlins also waived the common prenatal test that detects Down syndrome and were surprised when they received confirmation that Abby has it, they said.

“Most kids don’t leave the hospital with a manual — Abigail did,” Jennifer said.

At just a few weeks old, Abby visited DeVos Children’s Hospital and Mary Free Bed Hospital in Grand Rapids several times a week for care with various specialists — including a hematologist, cardiologist, and physical and occupational therapists.

Abby also had transient leukemia — a condition that generally resolves on its own and did so with Abby at about two months old. A few months ago, however, doctors discovered another blood disorder in Abby called neutropenia, a condition with abnormally low white blood cells.

The Sunderlins are currently bracing for another uphill battle, as they learned there is a “high chance” that Abby’s leukemia will return before the age of 3, Jennifer said.

“At first, it was really hard, and we didn’t know what Down syndrome was,” Jennifer said. “Now, it’s just kind of become our life — living day to day.”

Abby is now a smiling, laughing and crawling toddler. Her lovable and playful nature is contagious as she waves and gives people hugs.

“Other than the medical visits, she’s not much different than any other infant or toddler,” said Abby’s father, Matt. “Having a child with a disability, you don’t know how they’ll progress. … She’s doing everything in order — she’s just doing it later.”

As Abby knows a handful of sign language motions, she recently mastered the sign for “daddy” — a movement that “melted” Matt’s heart, he said.

The Sunderlins have become Down syndrome advocates, participating in walking fundraiser events in West Michigan and in Lansing. The family is holding a “Treasures for a Little Bit” party at their home next month to raise money for the local Down syndrome association chapter. The party is named after Abby — who Jennifer nicknamed “Little Bit” because “she’s my little bit of Heaven,” she said.

“We advocate to get the word out for other families and kids,” Jennifer said. “We’re helping the next family.”

The Brills and the Sunderlins say they hope others see their children as children — and not be afraid, stare or ignore them simply because they have a genetic condition.

“You don’t have to feel sorry for us,” Kyle Brill said. “A lot of people say, ‘I’m sorry,’ and I know it’s a typical human response. But there’s nothing to be sorry for. I wouldn’t change who Chloe is.”

Early intervention

The Grand Haven Area Public Schools District offers an early childhood special education program that works with children with disabilities, such as Down syndrome, prepare for grade school.

“Our goal is to make them as independent as possible — based on their level — so when they make the transition to a general education setting, then the transition is smooth,” said Joni Bennett, an early childhood special education teacher at Mary A. White Elementary School.

Children in the program participate in gym, learning centers and music. They learn letters and work on developing gross and fine motor skills. Speech, physical and occupational therapists, as well as a psychologist and social workers, work with the children individually and in groups, according to Bennett. She also poses certain questions to the children to set their thinking wheels in motion.

“I want them to know they have to think for themselves,” Bennett said. “… They’re special-needs (children), but they can process things just like everyone else.”

The program, which includes bus transportation, is free to qualifying families. A majority of the children in the program have speech and language disabilities, but others might have cognitive impairment or early-childhood development delays.

Bennett has been working with 4-year-old Chloe Brill for more than a year. While Chloe works with various speech, physical and occupational therapists a couple of times a week at the school, she will be entering the GHAPS Young Five’s program next fall, her parents said.

“She’s a pretty smart little girl,” Bennett said of Chloe.

Kyle Brill said the ESC program has been beneficial to Chloe, giving her exposure to a learning environment tailored to her needs. All the ESC activities — from reading, drawing, snack time and getting ready to go home for the day — has helped nurture Chloe’s independence.

“We feel that due to Chloe’s early exposure to the school environment, she will have the ability to be included in a more ‘normal’ setting as she gets closer to the K-12 ages,” Kyle said. “Without the program and teachers who run it, I’m not sure I’d be able to say she would be as far along with her development as she is.”

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