From the Press

-By Randy Turner, Winnipeg Free Press Reporter, 1994

When Lorna Stevens discovered her son Lindsey was born with a rare blood disorder, she wanted to learn everything she could about the potentially deadly disease.

"I’m the kind of person who needs information." Stevens, 40, explained. "And there wasn’t any information that we could put our hands on."

So, for the last number of years, Stevens has been tirelessly searching for, and collecting, every morsel of knowledge about a little-known disease called neutropenia.

How she wants to tell the world.

From the family’s River Heights home, people from around North America - including doctors - call Stevens with questions about the disorder caused by a low white-cell count in the blood.

Those who suffer from neutropenia have difficulty fighting off infections, everything from cold sores to pneumonia.

And, if not properly diagnosed and treated with antibiotics, the disease can be fatal.

That is why Stevens founded the Neutropenia Support Association Inc., a Winnipeg-based group which now is making inroads around the globe.

In recognition of her efforts Stevens will receive the prestigious 1993 Canada Volunteer Merit Award from the Federal Department of Health. Dr. Jon Gerrard, Secretary of State for Science, Research and Development, will make the presentation today at the Westworth United Church.

In an interview, Stevens said neutropenia is so rare that many doctors do not yet know how to diagnose the disease. And patients and parents of children born with the disorder lack both support and answers.

Not only does the support group distribute information about neutropenia in a newsletter, but the association allows people affected by the disorder something they lack - understanding. Stevens has logged upwards of 1,000 calls from across North America on the associations toll-free line - a phone in the family’s basement - since it was set up last January.

The Steven’s son, now 9, is still being treated with antibiotics.

Recent Update: Lindsey's neutropenia spontaneously resolved at the age of 10. Now 17, he recently received the James Brown Award in recognition of his leadership, academic and athletic abilities.

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