FERGUS – If you need a reason to smile, look no further than Rowan Black, a bubbly four-year-old from Fergus who sports his signature red eyeglasses and an infectious smile.
Rowan found it hilarious when his father Michael Black uttered “Oh!” as he turned each page in a board book.
But it’s not all smiles for his parents Michael and Amber Black, who put on a brave face every day as their son battles SLC13A5 epilepsy, an extremely rare genetic condition that brings lifelong challenges with movement, coordination, speech and feeding.
“He’s unlikely to reach a typical level of development,” Amber said matter-of-factly during an interview at their home.
“Other kids with it develop skills later in life and tend to plateau. Most end up walking but their gait is unsteady.”
Rowan can’t walk yet and has trouble with gross and fine motor skills. He can’t swallow and is fed with a tube.
And he can’t speak, although he certainly can communicate his pleasure – or displeasure – at the activities going on around him.
As he grows, he’ll be able to use communication devices to get his message across. Despite that, “his understanding is great,” Amber said. “He knows and understands a lot of what we’re saying.”
Amber had a normal pregnancy and normal birth. But it wasn’t too long before she and Michael started wondering if something was wrong with their precious new baby.
The condition is genetic, “but it’s recessive,” Amber said. “So, it was a very big surprise.”
Rowan is prone to seizures – some the full, big convulsive seizures expected with epilepsy, but some are so subtle they look like an eyebrow twitch.
“They are all scary,” Amber said.
“Mostly we can manage them at home. We don’t usually need an ambulance anymore,” although in his early days, Rowan was transported to McMaster hospital by ambulance several times and one time by helicopter to a London hospital.
The family is also well-known at Groves Memorial Community Hospital, which Amber and Michael describe as a “great” place for care.
“Groves definitely saved his life numerous times,” Amber said.
Rowan has been going to physiotherapy in Waterloo regularly since he was five months old to help properly position his hips and build some muscle so he can eventually walk.
The family has also used the services of KidsAbility.
“They gave us the tools to help us develop his skills at home and at school,” Amber said.
And now, Rowan is registered with the Guelph Wish Fund for Children, a not-for-profit agency that helps fulfill wishes for children and youth under age 19 with a significant illness, life altering injury or rare and debilitating syndrome.
Amber said they used some funding to get a physio vest, which helps the body and brain connect as Rowan works on fine and gross motor skills.
They also hope to get Rowan an adaptive bike, which will give him more independence, build his muscles and help him enjoy being outdoors.
“It’s mostly practical stuff we’ve been getting but he’ll like the bike. And maybe one day we’ll go to Disney World,” Michael said.
Guelph Wish Fund executive director Jessica Hill said the organization currently has 93 wish kids who live in Guelph, Elora, Fergus, Rockwood, Drayton, Mount Forest, Puslinch and Palmerston – “each with their own unique story and dreams.”
Each child in the program has $10,000 at their disposal.
Some families use the funds for medical supplies, wheelchairs, ramps and specialized equipment. Others use it for gas money to and from hospital. Others still will take the family to Disney World.
Hill said the wish fund has connections and can send a family of four to Disney World for $1,500, which is an excellent deal and very popular with families.
“Each wish is completely unique, and seeing the joy on a child’s face when they find out it’s coming true is incredible,” Hill stated in an email.
“It’s relief, wonder and a huge smile all rolled into one – it reminds families and our community that their child isn’t defined by their illness.”
“It’s an honour to work with these families,” Hill added in a subsequent phone interview.
“And at this time of year, for people struggling with any loss or grief, it cuts deeper. Add a sick child, it’s all so hard. We’re here to lighten the load.”
The Guelph Wish Fund for Children has launched its Season of Wishes campaign to help raise funds and awareness. The agency receives no government funding, so all its funding is through donations.
At the same time, Hill said she wants families to know about the fund and how they can apply.
Although the Wish Fund has been around for 42 years, many families don’t know it’s a resource they can tap into.
Hill, who has been executive director for two years, said she didn’t know about it when her daughter Addison Hill was ill from angiosarcoma, a rare form of cancer.
Addison died in 2022, just two days after her 14th birthday. But the community rallied around the family and Team Addy was born.
Through its Team Addy Family Fun Day, a three-on-three basketball tournament and an annual Concert with Addy-tude, Team Addy has raised more than $727,000 for sarcoma research and Toronto’s Hospital for Sick Children.
Hill said she wants families with very sick children to know there is support from the community that surrounds the Wish Fund.
“Every child deserves a smile,” she said. “Our goal is to make their lives a little happier.”
Amber said it was their pediatrician who told them about the Guelph Wish Fund, and they are grateful that Rowan was accepted into the program.
“We love the flexibility,” Michael said. “It’s pretty much a blank cheque.”
Families can spend the $10,000 all at once, bill monthly or as need and desire comes up.
The Black’s story imitates Jessica Hill’s story in some ways.
Amber was a board member of a U.S. organization, the TESS Research Foundation and was recently hired as its operations manager. Michael has now become a board member.
TESS is working on treatment for children with SLC13A5 epilepsy and Rowan will soon be part of a gene therapy clinical trial.
“It’s a very pivotal moment for the organization and for this disorder,” Amber said, excited at the prospect of treatment.
While Team Addy and TESS Research Foundation have nothing to do with the Guelph Wish Fund, the desire to help families with very ill children runs deep for the Hills and the Blacks.
Hill said it’s hard to hear the stories of the children and their families.
“But we really do want to make their lives a little happier,” Hill said.
For Michael, “what the Guelph Wish Fund does goes far beyond a single wish. They show families like ours that we belong to a community that cares deeply and shows up when it matters most.”
To learn more about the Season of Wishes campaign, the Guelph Wish Fund for Children, how to volunteer or access funding, visit guelphwishfund.com.
