Mary's Story
New Prague, MN

Mary started out as a great baby, nothing out of the ordinary during the first 3 years. At 3 ½, her dad and I were going in for our regular dental check up, so we thought we'd bring her along. It was the first week of January; she sat in the dental chair all by herself. Then the dentist says to us he has never in his dental career seen such bad gingivitis on a person so young, he did not feel comfortable treating it. So he referred us to a Dentist specializing in kids.

We made the next appoint the following week. He looked at her mouth and had never in his career seen anything like it, and thought that she had an underlying medical issue. So, off to the doctors office.

The doctor at Park Nicollet didn't like what he saw either. He took some blood tests and sent us home. The next day was a Friday. I got a call at 2:00 p.m. from the doctor telling me that my daughter needed to see a doctor up at Children's in Minneapolis. I asked when the appointment was. He said he wants to see you ASAP. I said "today?". His response was "As soon as you can get there."

If was a Friday afternoon, 20 below zero, with 40 below wind chill. I bundled my daughter up in a snowsuit, we got in the car and headed up to children's, about an hour drive. We meet with Dr. Stephen Marker. He was not sure what was wrong, but knew she had an infection that was deteriorating the gums around her teeth. They admitted her into the hospital that day.

We stayed for the weekend to get the infection under control. We still didn't know what was causing it. Over that weekend and following week's we met several different doctors. She decided she had chronic neutropenia, a very rare blood condition.

When they came up with a treatment, Dr. Marker says to me that she would need daily injections of the drug GCSF. Also the treatment is experimental and very expensive. It's $1,000 per shot. I asked for how long would she have to take them. He didn't know, possibly forever. Quick calculation $365,000 per year and experimental stuff is usually not covered by insurance.

If she didn't have the shot's she would probably keep getting mouth infections, and her face would become deformed from lack of teeth at such a young age and probably cause premature death. Dr. Marker, said let me see what I can do.

He found us a foundation that was willing to pay for the treatments, if I would release Mary's records for research. I said "where do I sign." Mary took Injections every day for 10 years, then every other day for 3 years. With regular doctor's visit's, slowly we weaned her off the medication. Now she is 18 and in her first year of College, with a great smile.