Oct. 25 concert raises funds for research into Sanfilippo Syndrome
There are many things Warren and Katherine Dendekker may never have the opportunity to do.
Warren, 8, and Katherine, 5, might never pursue post-secondary education. They may never know the joy of welcoming their own children into the world. They may never walk down the aisle with their beloveds.
But there are plenty of other things these adorable, loving children can — and will — do.
Warren and Katherine inspire great love and joy, and they bring caring people together who are united in their goal of finding a cure for Sanfilippo Syndrome.
“It’s easy to think of all of the things (Warren and Katherine) most likely won’t do,” said mom Sandra. “Get married, go to college, get a job, but once you get your mind around everything being so sad, you think about all the things they will do.
“What eight-year-old will cuddle on your lap reading stories? They bring so much joy and they bring out the best in other people, too.”
The Dendekker siblings were diagnosed roughly two years ago with Sanfilippo Syndrome. Children with the degenerative genetic disorder are missing an essential enzyme that breaks down sugars. The result is a build-up in the brain and other organs, which ultimately stops development and causes hyperactivity, sleep disorders, seizures, loss of speech and mobility, mental regression and dementia. Children with Sanfilippo Syndrome rarely live past their mid-teens.
Sandra’s two children attend special classes at Beverly Central School. She said son Warren is a very lovable but non-verbal child.
“He walks well and he can do things, but he has the mentality of a 12-month-old. You can engage him and sing to him, and he likes it, but everything goes in his mouth, just like a baby,” said Sandra.
Between January and March of this year, little Katherine lost all her language skills after being quite the little singer and chatterbox before the symptoms of Sanfilippo Syndrome took over her body.
Sanfilippo Syndrome occurs once in every 24,000 births. Sandra said she knows of only two other families in the area whose children suffer from the disorder. Among those affected are the Linton family from Toronto.
After their daughter, Elisa, was diagnosed with Sanfilippo Syndrome, parents Randall and Elisabeth started a foundation to share the 19-year-old’s story, spread awareness about the syndrome and connect families who have Sanfilippo children. The ultimate goal of The Sanfilippo Children’s Research Foundation is to raise money to fund research and hopefully find a cure. Since 1999 the foundation has raised more than $4.5 million, with a remarkable 96 per cent of every dollar donated being earmarked for research.
Sandra met the Linton family through a fellow member of the Redeemer University College board of director.
The Lintons, said Sandra, are a source of strength and inspiration, and provide a friendly shoulder to lean on as both families experience the joys and trials of having children with Sanfilippo Syndrome.
The Dendekker family — which also includes dad Peter, Noah, 11, and Emma, 15 — are big supporters of the Lintons’ campaign to raise money for research.
“We became such good friends with the Lintons and supported their events and their gala, and we had the urge to do something to raise money and awareness in our own community,” said Sandra.
The Dendekkers hosted two fundraising concerts for family and friends in their home in January and raised $50,000. Another larger concert, spearheaded by renowned classical pianist Valerie Tryon, is planned for Oct. 25.
A stellar lineup of musicians is set to showcase their musical talents for a great cause. Performers include Janet Obermeyer, soprano, Jenny Enns-Modolo, contralto, Suzanne Shulman, flute, Michael Fedyshyn, trumpet, Coenraad Bloemendal, cello, Chris Teeuwsen, organ, Valerie Tryon and Paul Thorlakson, piano, Jacqueline Templeton Muir, poetry reading, and the Redeemer Alumni Choir. The event will be hosted by master of ceremonies Hugh Fraser. It begins at 7:30 p.m. at MacNab Presbyterian Church, 116 MacNab St. S., Hamilton. All are welcome to a pre-concert reception at 6:30 p.m. Admission is by donation; cheques should be made payable to the SCRF (tax receipts for over $20).
For tickets, call Sandra at 905-628-8398 or email firstname.lastname@example.org. For more information on SCRF, visit alifeforelisa.org.