Words from Jamie & Janis Benzelock

Hi! My name is Jamie Benzelock. I am sixteen years old and I have Neutropenia. These past sixteen years have been all right; I mean, I guess you just have to deal with the good and the bad. Like the first thirteen years had its ups and downs, mostly downs though. However, the last three have been great. I've had the opportunity to take part in sports and other activities such as going on outings with friends and family. I guess you could say that my life has taken a turn, not for the bad but for the best.

Sincerely,

Jamie Benzelock

I am the mother of Jamie Benzelock, a 16 year old boy with congenital neutropenia of Kostmann's Syndrome. Jamie was diagnosed with this condition in September 1976. He was 10 months old. After having several infections of various types, doctors from the Cancer Clinic were asked to do some tests on his blood. After ruling out cancer of any type, the diagnosis was Congenital Neutropenia.

As Jamie grew, he suffered with infections, one after another. Children's Hospital in Winnipeg must be on volume V for the number of hospital visits. His most common type of infection were in his mouth, where he would get canker-like sores that developed into very large sores that once he was on antibiotics for about one week, he would notice the sore wiggling and the white top would fall off and leave a crevice in the same spot. He has had up to nine sores at a time.

The other problem he encountered quite often were anal sores. He had a lot of discomfort with that condition. Jamie also had pneumonia a few times as well. In January of 1989, Jamie and I traveled to Ann Arbor, Michigan, to take part in a clinical drug study for the drug G-CSF for patients that had chronic neutropenia. Once accepted and put on the drug, Jamie took about one and a half weeks until his count came up to normal levels, but did go up and down like a yo-yo. He has had some problems where he has taken antibiotics for about a week but since his going on the G-CSF he has not had any hospitalizations. Seeing him participate in sports with friends and basically being a "normal kid" has made everything worthwhile. Jamie is now going into grade XI and has a driver's license and recently started working part-time at Chi Chi's. As he heads off tonight to the Winnipeg Thunder Basketball game with three friends, I really believe his is normal! The one thing I should explain is that we know this is a treatment for his condition. It is not a cure. The side effects with the drug have been very minimal. He has never felt better or looked better plus he's eating well and is maintaining a healthy body. Because he has had no hospitalizations since January, 1989, the Medical System has certainly benefited by this wonderful drug. We, as a family, are very grateful to our dedicated physicians at the Cancer Clinic that have helped and encouraged us through the years. Without them we would never have been involved in the drug study and Jamie would not be enjoying his life today. Submitted by: Janis and Jim Benzelock