Langford parents May Sandvar and Scott Shannon took their son Ethan in his first race today to raise awareness of a muscle disorder that rules their lives.
The alert little boy, who will be three years old next month, arrived in a special wheelchair for the children’s race, starting on Menzies Street, one of the special events that is part of the GoodLife Fitness Victoria Marathon.
They were surrounded by family, including two grandmothers, all devoted to Ethan, who has Nemaline Myopathy.
“Overall, he has weakness but it especially affects his face muscles and his swallowing and breathing,” Sandvar said.
The family is fundraising to support research into this type of muscle disorder, with money going to A Foundation Building Strength. “Gene therapy is very promising,” she said.
Nicknamed Super E, Ethan was playing with a bright yellow truck on a tray attached to his wheelchair before the race.
When Ethan was born, everything seemed fine.
But after a week at home, he became ill and was taken to hospital where a lung collapsed and his medical journey — which has included two months at the B.C. Children’s Hospital in Vancouver — began.
Sandvar left her job as a licensed practical nurse to care for him.
Shannon is a kitchen manager at the Keg Steakhouse and Bar, where they said his employer has been tremendously supportive and understanding.
Their lives are complex. Not only does Sandvar watch Ethan’s every breath, there are good days and not so good days. “We have a lot of medical routines,” she said in a matter-of-fact manner. “It’s 24-hour care.”
Ethan often uses a special ventilator to help with his breathing. He has a feeding tube running into his stomach.
He sleeps in a hospital bed in their bedroom.
Shannon said they “Take it day-by-day and don’t think too far into the future.”
Despite Ethan’s fragile state, his father is focusing on the positive.
“He has overtaken all these obstacles that have been put in his way. It is pretty miraculous how far he was come along.”
Mum smiled when saying, “He’s worth it. He is just the sweetest kid ever. He just makes you appreciate the little things that we take for granted.”
Ethan’s intellect is not affected by the disease. He is so accomplished in sign language, “I can’t even count how many words he knows,” Sandvar said.
This family navigates other challenges. They receive government assistance and charities have helped provide some of the special equipment they need. Two of his wheelchairs, one with power, cost $7,000 and $8,000 each. A bath chair alone was $700.
They live in a crowded basement suite in Shannon’s mother’s house, that is filled with therapy and other special equipment, there’s little room.
Like other local residents, the family is finding it difficult to track down affordable rental housing, where there is little supply. And this family needs a place that is wheelchair accessible.
The family would love a van that is designed to carry wheelchairs but the cost is prohibitive. Ethan is growing and it is difficult to lift him into the regular family van.
“He is very tall and he is very floppy,” Sandvar said.
In the meantime, they plan activities when possible. “We try to go out and experience as much as we can. We don’t want him to be limited to just the house,” she said.
For more on Ethan go to: bit.ly/2cY3bXA
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