SURROUNDED BY LOVE
Five-year-old Henry Lucas has Sanfilippo Syndrome, a rare terminal condition that causes childhood dementia. His family knows his health will eventually decline, but for now they are focusing on spending time with the boy who ‘brings joy and light.’
The day the Lucas family was finally able to put a name on Henry’s condition, they gathered around the five-and-a-half-year-old during a bath.
“We didn’t want him any further away from us. We wanted to be right with him, and so we were all standing in the bathroom watching him have a bath, just sort of in a daze,” his stepmother Riki recalled.
Doctors were still waiting to confirm with complete certainty that it was indeed Sanfilippo Syndrome — a rare, terminal condition that causes childhood dementia, but the diagnosis left them feeling blindsided.
As Riki, dad Geoff and his mother watched, Henry turned to them and lifted up one of the cups floating in the water.
“He says, ‘Daddy, Riki, grandma, you want some lemonade?’” Riki said. “It became a family slogan: ‘Let’s just make lemonade out of lemons like Henry.’ So that’s what we do.”
When Henry was just about two years old, his parents noticed speech delays. Doctors were confident he would grow out of them.
They opted to run some tests, just in case. When all of them came back negative, a doctor with knowledge of genetic disorders recommended they turn to a specialist at the Alvin Buckwold Child Development Program. That’s when Mucopolysaccharidosis (MPS), an umbrella of diseases that result in progressive cellular damage, came up.
Doctors eventually confirmed it was MPS 3C, or Sanfilippo Syndrome Type C, the version of the disease that affects the neurological system the most. Unlike other types, there are no therapies to slow its progression.
“It’s been hard. It’s like being in chronic grief,” Henry’s mother Julie said. “Some days you’re OK, you’re enjoying life, and then you have a day where it’s like a truck hits you and you just can’t stop crying.
“You want to enjoy the time you have with him, but at the same time you look and wonder: ‘How has this happened to my son?’”
Geoff, Riki and Julie were in Saskatoon on Tuesday morning for a palliative care appointment at the Jim Pattison Children’s Hospital, planning for the complex care needs Henry will have when his mental and physical condition ultimately start to decline.
Usually one parent, Julie from Englefield or Geoff and Riki from St. Gregor, would make the trip. But they all wanted to be present for the difficult appointment.
Sanfilippo Syndrome has no cure and is so rare that doctors are tracking Henry’s condition to get a better understanding of how it progresses. Right now, his family is committed to his quality of life.
Henry is in kindergarten, with split classes in Englefield, meaning he still gets to spend time with his friends even though they’re now in Grade 1.
He swims with the Special Olympics district in Humboldt and might be going on a big camping trip soon, thanks to the Make-awish Foundation — a perfect fit for the kid who loves to be outside.
Prior to his appointment, Henry zipped around a Mcdonald’s playground while the adults looked on. Between riding the slide and delivering karate chops to a padded beam, he nuzzled into Julie’s arm to deliver a quick hello before sprinting off again.
Even with the hyperactivity that comes as a stage of the condition, it’s those moments his parents treasure the most, like when he places his hands over Julie’s while she crochets.
“He brings joy and light into every single day, every moment,” Geoff said. “The blessing in this is that Henry doesn’t know he has a terminal illness and he approaches each day they way everybody should.
“They say everyone has a purpose, and what is his purpose? For us, it’s the reminder that life is finite. Every day is an added blessing. And make lemonade.”