New Lease on Life

by Jan Soule

Reprinted in Neutropenia Support Association Newsletter, Volume 6, 1994 with permission of The Barrie Examiner. (Corrections made with Jan Soule's and Shirley Cox's permission). This story distributed by Thompson News Wire. Thank you to the Barrie Examiner. A number of Canadian families responded to this article for more information.

The thought of Tyler starting school frightened his parents.

If their blond-haired, blue-eyed pre-schooler brought back one germ it could have killed his entire family.

"He could have come home and wiped out the rest of the family," said his mother Shirley Cox.

Tyler's father Michael, 36, and his brothers Travis, 3, and Spencer, 19 months, all suffer from a rare blood disorder called neutropenia.

Neutropenics don't have enough neutrophils, white blood cells manufactured by the bone marrow. Neutrophils kill infections, without them the body has no defense against the daily barrage of bacteria and viruses.

A simple paper cut can lead to an infection extending up the the elbow within an hour.

Statistically, neutropenia affects one in every 100,000 people, which should translate into 270 cases across Canada. But, only 62 confirmed cases have been reported - 22 in Ontario. (Canada now reports over 100 patients including those diagnosed with milder forms of neutropenia.ED.).

The Cox family members have been diagnosed with severe chronic neutropenia.

Tyler was able to start school this year, with his parents safe in the knowledge that he would not transmit some normally safe childhood disease to his brothers, because of Neupogen. This new drug has completely tranformed the family's quality of life.

"We couldn't make plans. Our life revolved around keeping close to the hospital and following preventative measures to keep bacteria away from the family," said Cox.

The fear of catching infections was not an exaggerated one.

Eight years ago the family was devastated by the death of Stacey, their five-year-old daughter.

"Stacy only lasted three months in the school system before picking up a fatal infection," said Cox.

She died from an infection of the inner lining of the abdomen.

To maintain sufficient levels of neutrophils Michael, Travis and Spencer must receive daily needles.

"They cry, of course they cry; it hurts, but I try to make it as fun as possible."

"In the future we're hoping there won't be a needle, but in the meantime don't knock it!"

Not everyone can go on Neupogen because of the expense. Only the most extreme cases receive the financial help necessary from the government.

"I feel sorry for the people who aren't as severe (as her boys) and have to go through the hell we went through because they aren't sick enough (to receive the drug)," said Cox.

The medical bill for the three Cox family members if $95-$100 a day. That cost will increase because the dosage is prescribed by weight. As the boys grow so may their need for the drug. Their father Michael reacted extremely well to the drug and can maintain his health on a very low amount of Neupogen.

Spreading information on neutropenia is almost as important as Neupogen to Cox.

"If I can help one person that makes it all worthwhile," said Cox.