I believe in the power of serendipity. Sometimes, out of the blue something happens to change your direction, open your eyes to an idea or inspire you to follow a passion. A few months ago, while shopping at the mall at the Old Navy check-out, the name tag on a young clerk caught my eye. Owen. Then he met my gaze.
“When I was a baby, I was on the MacKids telethon, one of the triplets”, he said.
Of course, I remembered Owen and his two brothers!
“But surely, you can’t remember meeting me or the telethon!”
“No, but I’ve watched the video”, he replied.
We both smiled, savoring that little chapter of shared history and carried those lovely few moments with us that day. I asked him to say hello to his family for me.
Not long after, a Facebook message popped up on my phone:
“Hi Connie. Not sure if you remember me, I’m Braxton Clark’s mom. Your little wizard…lol”
I met Shannon Clark over 20 years ago, during the McMaster Children’s Hospital Mothers’ Day telethon I hosted along with my CHCH-TV co-anchor Dan McLean.
For some 17 years the Mothers’ Day telethon that became the MacKids Celebration on CHCH-TV told the stories of brave young patient families and featured interviews with them, as we showcased the good work underway at McMaster Children’s Hospital.
It was a wonderful celebration of the South-Central Ontario community coming together one weekend every year that raised millions of dollars to help equip this hospital with tools it needs to perform its miracles.
Those years had a profound effect on me as a mom, a member of this community and as a journalist. I could never walk away from a story without wondering what happened next.
So, this is my follow-up.
I met Shannon’s little wizard in 2002. With his endearing personality and wire-rimmed glasses, three-year-old Braxton reminded us of a little Harry Potter. My husband, who led the production team bought him a wizard hat which he proudly wore on TV.
Such a joyful little fellow despite overwhelming and worrisome health problems. Braxton was diagnosed with VACTERL association as a preemie, so many issues: Vertebral, Esophageal, Intestinal, Cardiac, Tracheo-Esophageal, Renal and Limb abnormalities. Add to that, growth hormone deficiency, hypoglycemia, chronic lung disease and a learning disability. “Braxton”, his mom says, “has been pretty much seen by all specialities that are offered by MacKids.”
You can’t imagine how excited I was to re-connect (thank you Zoom) 23 years later.
Braxton turns 26 in March. He graduated from Laurentian University with a degree in business and sports administration, with a minor in marketing. During an internship at a global marketing firm in Chicago, he found his calling as a motivational speaker. Braxton now has a company, Dream Owners Incorporated with plans to develop a foundation division. His mission?
“To empower people no matter what it is they’re going through or whatever struggles they or their family have, to be able to eliminate those obstacles and figure out what steps they need to achieve their dreams and essentially own what they want to do…show them there are avenues and support systems I hope to build along the way.”
Braxton credits his family for his positive attitude and drive, “not allowing me to take no for an answer, to believe in anything I can do and not pigeon-holing me into a diagnosis or statistics,” he told me. “If you can instill that into your kids at a young age then as they grow up, they will eventually believe it.”
Like all McMaster Children’s Hospital patients, Braxton remained under the care of the hospital until age 18. His doctor, Mark Walton, now a vice dean with Hamilton Health Sciences, has been a lifeline over the years and watched one of Braxton’s presentations. “I love this part of the job when I can follow kids into adulthood and see how they’re doing”, he told me.
Today Braxton has some kidney issues and there may be more challenges to come but he is taking control, vowing to increase visits to the gym to grow stronger physically, pay more attention to his diet while working on his career and scheduling 12 to 15 Dream Owners talks for 2025.
Mom Shannon works for a law firm specializing in injury and medical malpractice. Her clients and co-workers call her "the counsellor" because “I understand what our clients and their families are going through.”
She is also a board member for the Timmins Children's treatment Centre and hopes to work with Braxton’s Dream Owners organization. Shannon admits there was a time when she couldn’t have imagined the dedicated and successful young man her son has become but, “He’s got some pretty big dreams and goals, and I think he can attain them. I would take 10 of that kid,” she says. “He really is an inspiration.”
Braxton still has that wizard hat and every year he and his cousins still get together to watch Harry Potter.
Then there is Mackinly! We first met during the 2003 Celebration when ”Kin”, as he is called, was two. Kin was born with hydrocephalus and had already undergone three surgeries to implant brain shunts. Yet, like so many of these young patients, he was such a happy, loveable little guy with a wonderful loving family. We developed quite the bond (which was not hard to do!) and he couldn’t wait to dance with me at a post- telethon party, promising me another dance one day! Mom Rhonda sent me a precious video of Kin, watching Dan and me on TV.
There would be more visits to the hospital: an unrelated bone infection, a diagnosis of autism and a fourth brain surgery in 2018. Over the years these patient families develop a wonderful bond with their Children’s Hospital teams. During Kin’s last visit, Rhonda describes an encounter with a doctor in the hall.
“I know you,” the doc said.
“I know you too,” she replied. “As soon as I said I’m Mackinly’s mom he’s like oh my gosh!” They hugged.
Dr. Andrew Lachman was a med student when newborn Mackinly had coded. “He went through his emotional rollercoaster with us. He was so invested. It was like it was his child as well.”
Rhonda later emailed him: “You have no idea what that means to me and how much we keep you guys always in our thoughts.”
You might have guessed Mackinly Geyer is quite the celebrity at this hospital and beyond! When his name came up in Australia for a reception for a former President of McMaster Children’s Hospital, a Geyer relative told him Mackinly says “hi.” Dr. Peter Steer stopped in his tracks, “I only know one Mackinley and he’s on the other side of the world!”
When I saw him all these years later, there were those same sparkling eyes and that smile, now partly hidden by a beard!
Today Kin is a happy, 23-year-old. He loves painting and drawing and works for True Experience in Dunnville, where mom Rhonda is Executive Director. It’s a charity that supports and empowers adults living with mental illness. Kin is a groundskeeper and janitor. He also volunteers at his dad Gary’s organization, KINnections Life Centre, named in Kin’s honour, which helps people with developmental challenges.
“I enjoy working with clients, everybody here knows me,” he says with a sense of pride and humility.
“He is honestly the sweetest, most compassionate person. He feels what other people feel all the time…. the most compassion for others that I have ever seen in any human being,” this proud mom insists.
Mackinly is grateful for his second family at McMaster Children’s Hospital:
“They saved my life more times than I can count.”
There could be more brain surgeries and Kin says he’s okay with that and he is very philosophical about his journey.
“It’s not a bad thing to be a little different. If there are things going on out of your control, there’s no sense in hiding it, trying to mask it or avoid the unavoidable. I find acceptance within yourself is something a lot of people struggle with. The faster you’re able to accept that within yourself, the more you’ll be open to helping people with what they’re going through. Living your life without feeling this cloud that I’m different from everybody.”
A generation later, the Geyer family’s relationship with McMaster Children’s Hospital continues with a grandson who, remarkably also went through brain surgery. And Uncle Kin has taken him under his wing.
Looking back, mom Rhonda says, “If I could take away the pain I would but I wouldn’t change the experience for what it’s done for our family. You learn life is so precious. We’ve survived this for a reason, and we have to pay it forward and help as many people as we can”.
Dr. Robert Hollenberg, now retired, was one of Kin’s doctors. He remembers the little boy and all the surgeries he would require: “It’s really gratifying that he’s doing well now. So much of that must be due to the support of his family. P.S. Tell him the beard looks great!”
And there’s Treva, who spent much of the first two years of her life at McMaster Children’s Hospital. Diagnosed at birth with DiGeorge Syndrome, a chromosome disorder that affects the development of nearly every system of the body. She was days old when she underwent open heart surgery.
When I met this little girl with the big brown eyes in 2005, her parents recalled the uncertainty they lived with: “We don’t know if she will ever walk, talk, eat or even breathe on her own…we were told most of these kids don’t survive.” In fact, Treva would rely on tubes to feed and breathe for the next several years.
By age 8, Treva had defied the odds, taking part in sports at school, becoming quite the chatter box and both breathing and eating on her own once that trachea tube came out! In fact, her favorite memory from those years? “Mac and cheese and cupcakes, morning, lunch and dinner.”
Treva’s parents, Sue and Randy went on to become advocates for children with disabilities and their families, through the charity they founded, aptly called Opening Hearts. Over 10 years, Opening Hearts raised thousands of dollars to help scores of families, including siblings. Sue went on to became a full-time college instructor, working on a degree in disability studies.
There could be more heart surgeries or other issues in the years ahead but today Sue says Treva is much like any other 20-year-old, “…living life and making friends.”
She loves anime, gaming, shopping and hopes to start a YouTube channel where she is considering sharing her story.
Now, Treva is focusing on her spring graduation from Mohawk College’s Community Integration through Co-operative Education (CICE) program. And brother Atticus is following in their mother’s footsteps, graduating this year from the Early Childhood Education program.
Next for Treva, the Mt. Hope-based Apprenticeship Community Internship organization (ACI) program, dedicated to finding vocations for young adults with disabilities. Dr. Madan Roy, now Chief of Pediatrics at Niagara Health and Professor Emeritus, Pediatrics, McMaster, told me it was a joy to work with Treva and her dedicated family and is thrilled to learn of her upcoming graduation.
These parents are grateful for the teams at McMaster Children’s Hospital and while they have all found specialists for their special-needs young adults, Sue explains, “It was a hard transition.…but kudos to the Mac doctors, to this day, they even said ‘we’re still here if you need to connect with us.’”
Dr. Roy reminiscing about that little girl with the near impossible odds, sums up my follow-up story best. “I have no doubt that she will go on to achieve even greater things while continuing to inspire us all with the extraordinary strength, courage, and beauty that children with medical complexity possess.”
Thanks to families who believed in them and a life-long bond with McMaster children’s Hospital, three little MacKids from those long-go telethons grow up to be joyful, young adults with a compassion and drive to make the world just a little bit better.
P.S. Mackinly, I’m still waiting for that next dance!
McMaster Children’s Hospital cares for more than 100,000 children and their families every year.
Read the article published in Hamilton Spectator with more pictures here:
https://www.thespec.com/life/former-chch-anchor-connie-smith-met-these-children-on-mackids-telethon-now-theyre-all-grown/article_d6b74bc4-38d3-5f28-86f2-727c56b714a1.html