Cannon Walsh and his uphill battle with Sanfilippo Syndrome has captured the hearts of many
By Josh Bootsma
LANSING, Ill. (October 20, 2022) – Turning 5 is a joyful milestone. But for the Walsh family, their son Cannon’s fifth birthday last weekend was both especially joyful and twinged with sadness. Joy because Cannon lived to see another year, and sadness because they don’t know how many birthdays Cannon has left.
Cannon, the youngest of four, has been diagnosed with Sanfilippo Syndrome, a rare disease that impacts only 1 in 70,000 newborns worldwide and is commonly called “childhood dementia.”
The disease is a genetic metabolism disorder, and can cause slurring of speech, headaches, infections, sleep problems, and behaviors similar to those caused by autism. Eventually, as the disease progresses, symptoms can include seizures, loss of motor skills, and severe cognitive decline. Most children with Sanfilippo Syndrome don’t outlive their teenage years.
Diagnosis delays
Cannon’s 5 years been filled with medical uncertainties and delayed diagnoses. His initial diagnosis was autism, though some questions remained about his symptoms.
Shawn Walsh, Cannon’s father, said the family visited multiple doctors, including some that he said “brushed us aside.”
It was Lindsay Walsh, Cannon’s mom, who first learned about Sanfilippo Syndrome. “She happened to follow this person on TikTok, and she goes, ‘This is Cannon. We need to look into this more, this Sanfilippo Syndrome,'” Shawn Walsh said.
Supported by a doctor in Crown Point, Indiana — where the Walshes live — they sought after highly-specific genetic testing to determine if Cannon had Sanfilippo. Though nearly every hospital that offered the test was booked out for a year, the family eventually got the test done.
“We were seen by a genetics doctor finally, and they did the testing. We had to wait three weeks. And then we found out that indeed he did have Sanfilippo Syndrome,” Walsh said.
There is currently no cure for Sanfilippo Syndrome. The disease affects a single gene in a child’s body, making it unable to process carbohydrates properly. Without the enzyme needed to properly process certain sugar molecules, the molecules build up in cells, gradually increasing their debilitating effect on the body until fatal brain damage occurs.
Cannon Walsh and Sanfilippo
When Cannon was born he had an umbilical hernia, a common occurrence in newborns, but also one of the earliest symptoms of Sanfilippo Syndrome. Chronic ear infections, coarse hair, and thick eyebrows were among other early signs of Cannon’s condition.
Currently, the 5-year-old’s development is similar to that of a 2-year-old, Walsh said. He is able to speak in only a limited vocabulary, often using noises or a family-specific sign language to communicate. Cannon suffers from major tantrums and will sometimes will stay awake for 36 hours at a time.
“Right now he likes to run. He has no fear. He’ll go out and do whatever, so we have a neighborhood watch for Cannon alone,” Walsh said. “We have surveillance cameras inside the house and outside the house so that we can monitor where he is at all times. He will go everywhere and get into anything.”
“It’s heartbreaking at times, and frustrating at times,” Walsh said. “And it’s getting progressively worse.”
Regardless of his health struggles, Walsh said his son is ultimately a delight.
“He’s a jokester. He jokes about everything.” Walsh said. “He plays knock-knock jokes on you. He does all sorts of funny things and makes us laugh every day. He loves Sonic. He loves playing with his brother.”
Outlook and support
Walsh said Cannon’s outlook is not promising, but that hasn’t stopped his family from doing everything they can to help him, including inquiring about multiple clinical trials.
“We grieved when we found out [it was Sanfilippo Syndrome]. It was devastating for us. And then we gathered ourselves together and we said ok, now we have to figure out how we’re going to save his life and fight for him,” Walsh said.
Part of that fight, Walsh said, is raising awareness of the rare disease, as trials are hard to find and not well funded.
“It’s hard because I know it might all go away one day. It’s been tough to handle,” Walsh said in an emotion-choked voice. “But the more awareness we get about it, the better. Not a lot of people know about it, and if we can get people to be aware of it then the drug companies might say something and do something about it.”
To that end, the Walsh family has created a Facebook, Instagram, and TikTok account using the tagline “TeamCannonCan,” where the community can stay updated on Cannon’s condition and where the family can share information about Sanfilippo Syndrome.
Walsh is the Assistant Executive Director of Student Services at School District 158 in Lansing, and was previously an Associate Principal at Memorial Jr. High. The District 158 community has already rallied to support the family by committing to wearing purple on November 16 for National Sanfilippo Awareness Day, and encourages the local community to do the same.
“It’s unbelievable how they took off and ran with it. I was still grieving, and the community just took off and said, ‘Hey, we’re going to do this. We’re going to help you.’ That was just the biggest and most amazing thing we’ve ever seen,” Walsh said.
District 158 will also sell T-shirts and bracelets with the “Team Cannon Can” message printed on them. These items will be available for purchase in the coming weeks from any District 158 school.
“Cannon is the sweetest, most caring boy out there. He just loves life. He loves to be outdoors. He loves making you laugh and smile. He will do that forever, and we’re going to make sure that we’ll fight like ever to save his life,” Walsh said.
