Hydrocephalus Canada

Family fights for answers to son’s deteriorating health

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KITCHENER — "Fight Till The End". The newly inked tattoo on Cody Richard’s arm is an indelible reminder of both his failing body and unflagging courage.
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The Kitchener teenager overcame many medical challenges, having been born with spina bifida and hydrocephalus. Dozens of surgeries were needed throughout his childhood for the spinal cord development problem and the buildup of fluid inside his skull with the hydrocephalus.

Despite all those issues, he was an active and happy child.

That started to change a couple of years ago. Richards began suffering severe, unrelenting headaches with no relief from medication. He noticed numbness in his lower legs, which continued to move upward and now he has no feeling from mid-thigh down.

He depends on a wheelchair or walker to get around, compared to before he walked just fine. He climbs the stairs in his family’s townhouse by sitting on the steps and pulling himself up one by one with his arms.

“It’s tough. I’m learning to cope, I guess,” Richards said.

What’s really difficult to accept for Richards and his family is that doctors have no answers, tests are inconclusive.

“Nobody can tell us why,” said his mother Heather Dalling. “Nobody’s doing anything. They’re just throwing their hands up in the air.”

Watching her son suffer every day is terrible.

“I don’t know where else to turn. I don’t know what else to do,” Dalling said. “Unless someone steps in, I’m going to lose him.”

The worry that Cody’s health will continue deteriorating weighs heavily on the family.

“Now it’s up to his waist. Does it keep going?” said his stepfather Philip Dalling.

They’re waiting on referrals to several specialists in their search for answers, reaching dead ends in their current pursuit to see a neurosurgeon. The difficulties are compounded by Cody turning 18 and leaving the care of a pediatric team.

The family, which includes four daughters, does not have a doctor and a visit to a local emergency department or walk-in clinic is not helpful because his history is long and complicated.

“It leaves us lost,” Dalling said. “If something comes up, now it’s up to me to guess who to go to.”

Dalling stays home to care for her son, not just with his physical needs but also to make sure he stays safe because she worries about his mental stability.

“The fight has gone out of him,” Dalling said. “He’s a shell of who he used to be.”

Physiotherapy helps to strengthen his arms, allowing Richards to support his body’s weight on the walker or crutches. Exercises are not helping his ever-weakening legs.

“I feel like a ghost,” he said to explain the lack of sensation in his lower limbs. “When I’m walking, my legs will give out and I’ll collapse.”

Coping with the constant headaches — sharp, stabbing pain throughout his head — is exhausting. Somehow he manages to keep up with his schoolwork despite the many days home sick and he will graduate from Grand River Collegiate Institute later this month.

Richards distracts himself with drawing, a book filled with sketches near his bed to grab when he can’t sleep. His dog Karma comforts him on tough days.

“She’s sort of worked herself into a therapy dog. She knows when I’m not feeling well and in pain and she’ll lay with me for hours,” Richards said.

He said it would be nice if doctors could rule out something, but also that he’ll still be able to do the things he enjoys now — just differently — if he loses all use of his legs.

Richards would like answers, not just for himself but his family.

“They want things to get better and for everybody to be happy,” he said.

Other tattoos decorating his skin show his deep devotion to family. Their names line one arm. His first tattoo is the word family in a heart on his chest.

“I want them to be close to my heart if I ever go anywhere,” Richards said. “If I get really sick and couldn’t keep going, then I’d always have them there with me.”

Originally published in Kitchener METRO daily newspaper