Video by Blaise Kemna

CHOICES

A CEREBRAL PALSY STORY

One out of every 400 people in Canada are diagnosed with cerebral palsy and it is the most common physical disability in children. Choices introduces you to the Alberta families who are dealing with this condition and highlights the triumphs and pitfalls of the province’s hyper-individualized support systems.

Emiko Pessu is 12 years-old. 

He’s tall and powerful, biceps bigger than most adults. He loves basketball and adores Stephen Curry of the Golden State Warriors. 

 

An infectious grin, mischievous sense of humour and indomitable spirit are evident in his colorful retelling of events over the course of his last week: this classmate has a crush on this classmate, this peer hurled this insult, this character made such and such choice in his favorite television show. The list goes on. 

 

According to his mother Joyce, Emiko, “is very positive and cannot easily be cast down.” And from his stories, it’s easy to tell.

 

Emiko was also born with cerebral palsy (CP), a group of disorders which can affect physical and cognitive development.

 

With four siblings, Emiko’s home is already busy. But on top of regular family duties, the Pessus also face unique routines and challenges associated with Emiko’s special needs that most families may never encounter. Medicine, therapy and wheelchair accessibility are all things with which they are very familiar and think about on a daily basis.

Video by Blaise Kemna

Emiko wakes up to prepare for the day. He has very limited use of his left hand which means he does most things with his right. For example, to brush his teeth, he often uses an electric toothbrush. Today it’s still charging, so a good old-fashioned toothbrush it is. It may take him longer to complete the task than many typically-developing children, so, when pressed for time, his family helps him.

6:40AM

Emiko can independently feed himself, however, many children with CP cannot. Because of difficulties with gross motor skills, fine motor skills or even challenges swallowing, many children need assistance. 

 

In some cases, they are even given a gastrostomy tube (or G-tube) which is surgically inserted into the child’s belly, so that nutritional supplements can be pumped directly into their stomach. Other children, who suffer from seizures associated with CP, may be on a special preventative diet. Most also take medication with their meals.

7:10AM

Because he is in a wheelchair, transportation takes forethought. Emiko is picked up from home by a wheelchair accessible school bus.

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Photo by Andrea Wong

8:00AM

Individuals with CP have a wide range of cognitive abilities. Emiko goes to a regular school but is in a special classroom where learning aids are available. His mother, Joyce, says that Emiko “reads books to his ability and we help him out.”

 

Writing is also a challenge for Emiko and his mother says that, “if the homework is something he cannot write, he tells us what to do.” He began taking private lessons one night a week, and has begun to see improvements in his reading abilities.

Video by Blaise Kemna

Emiko takes the bus to therapy after school. He has therapy three times every week, on Monday and Friday evenings, and Saturday afternoon. The therapy programs are designed to keep his body supple and loose. This is an important aspect of physical maintenance for individuals with CP, as muscle tone, stiffness and posture can be an issue, especially as they grow older. 

Video by Blaise Kemna

On nights when he has therapy, Emiko eats dinner there. Otherwise, he eats at home. “We assist him to the table, [and] he takes his medication,” says Joyce. “He then crawls to join his siblings in whatever activities they are doing.”

 

Emiko will play with his siblings until it is time for bed. After a good night's sleep, he will get up and work hard again the next day.