Acceptance comes little by little

Little Emma Clarke draws stares wherever she goes.

“She’s like a living doll,” complete strangers will tell her mom.

“How can she be walking already?”

“How long will she live?”

Nikky Arsenault understands the curiosity her toddler arouses but wishes people would think first.

“They forget she’s my daughter and not just a syndrome,” she said. “Because she has dwarfism it doesn’t mean her life expectancy is any different.”

Emma was born with Russell-Silver syndrome, a growth disorder that impacts appetite, blood sugar and learning development. Babies with the condition have low birth weight and often fail to thrive.

Emma spent 10 months of her first year in and out of hospital. She quit breathing three times on her first Mother’s Day.

Now two and half, her growth is so delayed she still wears the infant shirt she came home in from the hospital at 3.5 pounds.

Arsenault is a full-time student at Lambton College and Emma’s dad, Darrell Clarke, manages a pizza shop. Together they want people to learn something about the syndrome to help gain acceptance for their daughter.

“I understand the curiosity. I’m curious myself,” Arsenault said. “But there’s a line between being curious and making people feel uncomfortable.”

As a child with dwarfism Emma faces numerous challenges ahead.

She will need corrective bone-lengthening surgery on her left leg at ages 5 and 14, to allow her to walk properly.

She will need speech therapy and oral surgery to remove and straighten teeth. School and acceptance won’t come easily.

Because the average height of an adult female with Russell-Silver syndrome is 4 feet, 7 inches, Emma could also benefit from hormone therapy.

“It’s been a stressful two years but she has definitely come around a lot,” Arsenault said. “But we won’t be able to afford the growth hormones. They cost about $130 a week.”

There are no local specialists with experience in the syndrome, which affects an estimated one in 100,000 children.

The Sarnia family joined Little People of Ontario recently and continues to draw support from the Magic Foundation, a U.S.-based organization that helps parents of children with growth disorders.

“We just want others to understand,” Arsenault said. “Right now, she is treated like a puzzle that everyone wants to solve.”

– George Mathewson