When Emmitt Burke was first diagnosed with a aggressive form of muscular dystrophy, doctors didn’t believe he would reach his fourth birthday.
“When they first diagnosed him, he was so extreme they thought maybe he’ll live to be four and he’s over that. Now they’re saying 10,” says Emmitt’s foster mother Virginia Burke. “We take every day as a little gift.”
Emmitt has Duchenne muscular dystrophy, an aggressive form of the neuromuscular disorder usually seen only in boys, where muscles become weaker in time as the body cannot make the muscle protein called dystrophin.
The four-year-old Stony Plain toddler is now learning to walk — a milestone few medical professionals expected him to achieve.
Emmitt started walking with the aid of a walker last summer and began taking a few steps on his own this January.
Last month, he was named ambassador for the Edmonton Walk for Muscular Dystrophy which takes place Aug. 25 at Gold Bar Park.
Emmitt Burke and his educational assistant Teresa Lindsay enjoy playtime at Stony Plain Central School. (CBC)
His foster parents first noticed something was wrong shortly after his first birthday.
Muscle loss typically begins in the upper legs and spreads to the pelvis and arms. The deterioration can make the affected muscles appear severely swollen.
“His muscles breakdown faster than they can develop,” Burke said. “He looks like he works out, but it’s just the muscle breaking down so much.”
Still trying to understand disease
After Emmitt’s diagnosis, the family got involved with the Edmonton chapter of Muscular Dystrophy Canada to better understand what their son was going through.
They participated in their first walk for MD six days after Emmitt was first diagnosed and they were still trying to understand the inherited disorder.
The money raised from the walks benefits thousands of kids and adults who live with varying forms of the disease across the country, said Mark Perry, with Muscular Dystrophy Canada.
“Mobility and medical equipment is very expensive,” Perry said. “The list is kind of never ending.”
Emmitt’s achievements have inspired those around him.
On June 7, students and staff at Emmitt’s school, Stony Plain Central School, are hosting their own Muscular Dystrophy walk.
“When he became the ambassador, we just thought, ‘This is a great opportunity,’ ” said Charlotte McElroy, Emmitt’s early education teacher.