Advocating Parents
Advocating Parents


Surviving on hope. Parents push cure for daughter,7.

Emmy Simmons with her mom, Julie Simmons.--VERONICA HENRI--Sun

SHARON LEM, The Toronto Sun
March 28, 1999

Julie Simmons leans toward her daughter, strokes her face and talks to her about the events of the day.

"How is Emmy feeling today? Did Emmy have a good lunch? Yes, she did, didn't she. Emmy is such a good girl and Mommy loves her so much," Julie says as she cuddles her seven-year-old daughter in her arms.

The Mississauga mother of three exudes energy and is animated as she constantly stimulates her little girl's thoughts in hope that Emmy will respond to her questions.

Love is in the room when her mother snuggles her nose against Emmy's nose, it's there when her father reads to her from her favourite book -- and it's there when her sister Alex, 10, recounts what she did that day in school.

Doctors at the Hospital for Sick Children diagnosed Emmy at birth as blind, deaf and unable to speak, excrete, eat or crawl. Amazingly enough, Emmy does respond to her mother's questions about colours, the favourite clothes she is wearing, the weather outside and past experiences about Halloween and Christmas.

Emmy was born without myelin in her brain, the white matter that insulates and wraps around the nerves cells and acts as an expediter to send messages from the brain to the body at certain speeds.

At the Mayo Clinic, doctors there told the Simmons there were only between 20 and 200 people like Emmy in the world.

From the day Emmy was born, her parents have had to breathe life into her. There have been dozen of times when the Simmons nearly lost her after she went into a spasm and had to be resuscitated. Her parents remain resilient and there's no hint of giving up.

People who suffer from multiple sclerosis, more than a million worldwide and over 50,000 in Canada alone, are also missing myelin in the brain.

"Emmy is very aware of what's going on. She's got a little person locked inside a little body ... If we could repair the damage we could return some level of function to her," says Emmy's father, Wayne.

There is no cure for missing myelin, and children like Emmy invariably die horrible deaths.

However, Emmy's parents believe with all their heart that one day scientific research will discover a way to make their daughter normal.

The Canadian Myelin Research Initiative

The Simmons believe in new technology and research so much that they established the Canadian Myelin Research Initiative, a fund-raising arm to support scientists working on a cure for Emmy and others like her.

In 1997, the Simmons funded a cell transplant unit at the University of British Columbia under the direction of Dr. Seung U. Kim. The researchers at UBC have been working on cellular strategies to repair the brain along with fellow collaborator and former student of Kim, Dr. Evan Snyder of Harvard Children's Hospital in Boston.

They've finally come to the point where they can begin critical human trials.

Snyder and Kim have been able to isolate a specific kind of brain cell -- called a stem cell -- that can grow in petri dishes and be integrated in a seamless fashion to form different brain cells.

Snyder uses the analogy of reseeding a lawn to explain regrowing these stem cells into the brain.

"Imagine you had stem cells which were the starting blocks of the brain and during development you take them and isolate them at one time, so they are continuously available and you never have to go to another donor."

Snyder and Kim have been able to keep these human cells alive for close to two years.

"Then you graft these stem where it will distribute in a seamless fashion into the fabric of the brain," Synder explained.

Snyder said these stem cells could in theory be transplanted into patients with degenerative brain injuries and cure people with Down syndrome, Parkinson's, Alzheimer's, MS or spinal cord injuries.

"Think of stem cells as being the most central part which exists in plants and trees and gives rise to branches and leaves," Snyder explained.

Snyder said in his mice experiments, they are able to keep the neural stem cells constantly dividing and growing in tissue culture petri dishes. When those cells are transplanted into the brains of mice with degenerative brain diseases similar to those of humans, they repair the damages in the brain.

"We've been able to show with the mouse models that the neural stem cells can become all the various cells of the brain," Kim said. "Therefore, it has the potential to repair damages to the brain."

Kim and Synder have taken these mouse models as a blueprint and they have developed a human neural stem cell that has been biologically engineered and treated to multiply and grow in areas of the brain.

Snyder and Kim say it'll cost about $330,000 to put six people in human trials.

The Simmons are striving to raise those funds through their fund-raising efforts at the Canadian Myelin Research Initiative.

"If we even had $1 million we'd already be so much further ahead than we are now," Snyder said. I'm not going to be happy until I've made a difference in someone's life."

Emmy's life, and the lives of a million more, depend on it.

Want More Information?

Anyone wishing to know more about this research can call Wayne and Julie Simmons at the Canadian Myelin Research Initiative, tel. 905-567-8843, fax 905-567-9189, e-mail