Meet the Bruinsma Family Troy, Rosalyn, Tucker, and Grace

22q awareness month

By: Maria Smietana

Photos by: Leah Parks-Nightingale + Willow Photography

Long-time Carmel residents Troy and Rosalyn Bruinsma had never heard of 22q11.2 deletion syndrome (22q) until their daughter Grace was born.

Troy, Rosalyn, Tucker 20, Grace 11

“Finding information and people who were familiar with it [22q] was a struggle, said Rosalyn, a Pittsburgh native who grew up in Indiana. “It has been a scary path to navigate. Our daughter’s health and emotional challenges made us educate ourselves with as much information as we could find and seek out every avenue to help her live the best life possible.”

Tucker 20 and Grace 11

22q deletion syndrome is a disorder in which a small piece of genetic material is missing from chromosome 22. According to the 22q Family Foundation (https/22qfamilyfoundation.org.), this deletion can affect nearly any system of the body and can be the cause behind nearly 200 health and developmental issues.

Because each child born with the syndrome can have any number or combination of these issues, 22q can be very difficult to diagnose. But as research on 22q has progressed, those that occur most commonly have been identified, and include heart abnormalities present at birth, immune system malfunction, distinctive facial feature differences, submucosal cleft palate, kidney abnormalities, low levels of blood calcium, decreased blood platelets, and hearing loss. Common developmental problems include delayed growth and speech and mild intellectual or learning disabilities. Children with 22q are also more likely to have ADHD and autism spectrum disorder than other children https/medlineplus.gov/genetics/condition/22q112-deletion-syndrome.

Rosalyn and Troy

Grace was born with several of the most common features of 22q. Her heart abnormality required two open-heart surgeries before she was 4 years old. “During the first surgery, she had complications and spent an extended time in the ICU,” Rosalyn recalled. “It was very scary and put many things about our lives in perspective.” Her submucosal cleft palate also required surgery, and her immune system, said Troy, is challenged to fight even the mildest of infections.

Tucker 20 and Grace 11

“As scary as the health challenges are, the social and emotional issues are sometimes harder to deal with,” Rosalyn said. “The hardest thing is to hear an evaluation and see the list of challenges that Grace faces. We had [to learn to accept] that if we don’t acknowledge those, we can’t help her. We have wonderful support teams that also want nothing but the best for Grace and when we work together, we are far more successful. We learned to celebrate the little things and never underestimate what she is capable of. I always tell people that she has taught us persistence, patience and to appreciate the simple joys.”

Now 11, Grace attends Clay Middle School in Carmel. She receives speech and occupation therapy at Mini Minds, along with other support services at school. She takes dance and piano lessons and loves to draw.

The Bruinsma’s oldest child, Tucker, now 20, is a sophomore at Belmont University, a performance-art focused school in Nashville, TN. “He has been an amazing influence for Grace,” Rosalyn said. “They both enjoy music and art.”

As Grace grows, meets her challenges, and benefits from surgeries and treatments for the medical aspects of her condition, the Bruinsmas are increasingly able to enjoy the things that other families take for granted. The family loves fall and Halloween, so every year, they go pick pumpkins then carve them together. Grace and Tucker have a tradition of decorating a gingerbread house for Christmas together every year.

“When Grace was little, we tried to avoid loud and busy places to eat,” Troy said. “She was also more limited in what she would eat. As she has gotten older, she loves to go out and try new places, as does her brother. Our whole family generally loves all types of restaurants.”

With the many surgeries and illnesses Grace endured while she was little, the Bruinsmas didn’t have the opportunity to take many vacations, so they’re trying to make up for lost time. So far, the beach has been a favorite, as has just exploring new places and trying new things.

“Wherever we go, safety is always our main concern,” Rosalyn said. “With Grace’s immune system challenges, we are always very aware of our surroundings. But we have also learned that sometimes you just need to go with the flow and take things as they come. I am sure there are some things we’re so used to doing that they are now second nature and don’t even seem challenging – it’s just what we do.”

A happy memory that has stayed with Rosalyn came from an occasion when Grace attended a birthday party at a rock climbing center. “I really thought she would try once, get scared and be done with it,” Rosalyn recalled. “At the first try, she got scared and you could see the tears start to fill her eyes, but she took a minute, and then tried again... and again... and again... and then she went all the way to the top!”

Grace is a beautiful and photogenic child who poses patiently for pictures, sporting a big smile and sometimes an impish grin. Her lean frame shows off clothing well, leading one family friend to comment that she may find her calling as a model. But she’s not too old to enjoy being tucked into bed by her parents, who still sing “You are my Sunshine” to her every night.

The Bruinsmas credit the many people and places that have helped them navigate the special needs world, especially the 22q Center at Nationwide Children’s Hospital (https/www.nationwide childrens.org), the team at Mini Minds, our case manager, and Grace.