The Cole family, (from left) Levi, Heather, Joshua and Silas (Photo by Katherine Comparetto)
Every afternoon, kindergartener Silas Cole climbs down off the bus and tells his mother, Heather, all about his day.
What seems like a simple daily routine for most families is a triumphant moment for the Cole household. Heather and her husband, Joshua, remember that not long ago Silas couldn’t yet speak a word or navigate stairs. “Even when he was a baby, we felt like something was going on,” Heather says, “but as first-time parents, it was hard to know for sure.”
For the first 12 weeks of his life, Silas needed to be held around the clock to self-regulate. As the months went on, he remained in the lowest percentiles of height and weight. At 18 months, he wasn’t yet walking or talking. Silas was sick all the time, and his eating, swallowing and breathing just seemed different. Heather says her concerns were dismissed at regular medical checkups and appointments. “It made me feel crazy,” she says. “I was beating myself up and thought I was doing something wrong.”
When Heather and Joshua’s second son, Levi, was born and started meeting the typical milestones, Heather searched for better answers. At Bon Secours St. Mary’s Hospital, Silas was referred to the in-house University of Virginia genetics team for further testing, as well as pediatric cardiology, neurology and endocrinology; he still receives care from endocrinologist Dr. Elna Kochummen. “It took six months to get the genetic testing results back, but there was a lot of relief when we got the diagnosis,” Heather says.
Silas has Wiedemann-Steiner Syndrome, a rare genetic disorder associated with physical and intellectual disabilities. While there are hundreds of thousands of genetic disorders, there are only 1,000 known cases of WSS in the world. “The diagnosis opened a lot of doors for us and helped explain everything,” Heather says, “from that strong sensory input he needed as a baby to his recurring infections.”
On the Coles’ behalf, Dr. Kochummen reached out to the only WSS specialist in the country, located at the Kennedy Krieger Institute and Johns Hopkins. “She collaborates with their team of specialists and coordinates resources to have his needs met in Richmond when possible,” Heather says.
With a diagnosis, the Coles were able to get a Medicaid waiver through Cardinal Care, Virginia’s Department of Medical Assistance Services. The program, which is not income-based, serves more than 260,000 people statewide, including children and adults with disabilities. “Without the CCC [Commonwealth Coordinated Care] Plus waiver and community donations, there’s no way we’d be able to get Silas the care he needs,” Heather says. “Silas has been able to receive intensive physical therapy, occupational therapy and speech therapy at Bon Secours Richmond Hope Therapy Center. They have the only pediatric intensive care therapy program in Virginia.”
Silas now goes to physical therapy and speech therapy once a week, but when he started at age 3, he went more often. During his time at Richmond Hope Therapy Center, he’s learned to walk, talk, climb stairs and ride a bike. “Richmond Hope Therapy is so open and welcoming, and there’s so much positive reinforcement,” Heather says.
During Silas’ care, Heather learned about the Bon Secours Richmond Health Care Foundation’s annual fundraiser for pediatric programs and services, the Children’s Hope Gala. At last year’s event, Silas was the featured patient and star of a YouTube video promoting Bon Secours. Sharing their story was so meaningful, Heather volunteered to help plan this year’s gala on March 25. “Dedicating time and resources toward helping other children and families will always play a role in what I do, and we do, as a family,” she says.
Many of the women on the Children’s Hope Gala committee have a personal connection to Bon Secours Richmond. Two are doctors, several are spouses of employees, and others have had babies in the NICU or have found comfort in programs such as Noah’s Children, which provides pediatric palliative care. “It’s wonderful being part of such a strong group of women who are turning their passions and their family’s life-altering events into something positive,” Heather says. “I’ve been to a million galas, but this one feels different because we’ve had such a personal connection, and Silas benefits so much.”
Some of the specialized equipment at Richmond Hope Therapy Center costs upwards of $200,000. In the past, the gala has contributed funds for adaptive tricycles, augmentative and alternative communication devices, and functional electrical stimulation bikes. Proceeds from the gala have also funded sibling counseling through Noah’s Children; Disney Plus accounts, video games and iPads at pediatric units; a celebratory event for children affected by craniofacial disorders; and many supplemental items to elevate the patient experience.
Heather hopes her involvement in the Children’s Hope Gala will not only raise awareness of Silas’ rare genetic disorder but also help other parents facing difficult medical challenges feel less alone. “If you feel like something is going on, but you’re not sure, trust your instincts,” she says. “Managing a complex medical issue can be a full-time job. Knowing what resources are available and finding a community of support are so important.”
Heather says Facebook groups like Momatopia and Better2gether RVA can be helpful. The Coles also researched special education programs in the area. They ended up selling their house and moving so that Silas could attend Colonial Trail Elementary School, a Henrico County school offering a blend of academic integrated services special education with a mainstream classroom experience.
“We would do anything to give Silas the best chance to thrive,” Heather says. “He’s a genuinely joyful and kindhearted little boy who lives each day to the fullest and teaches everyone he meets something new each day.”
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