Let's talk about Pearson's Syndrome

Today is my daughter's birthday and she has reached the wonderful age of 2. Many of you understand what an accomplishment that is yet certainly no indication how long her future will be.

Last week, we learned she is now making red blood for the first time since birth. Her platelet line has been wavering in its return and she is sustaining her own ANC.

Two years ago, she was born anemic and there were many ideas of where it came from. Her birth was fast and there was suspicion that it was the cause. I now believe she came fast because my body was rejecting her. She was just under normal levels of hemoglobin. She received her first red blood transfusion on Valentine's day.

Through her first year, her white line failed, her bone marrow was tested twice, but her overall health was pretty good. She was a chubby baby that needed blood regularly and a bit developmentally delayed. We waded through one possible diagnosis after another, each one worse than the one before.

Finally, just before Thanksgiving we recieved her diagnosis, thanks to the National Institute of Health. They took over her case and ran many tests that the insurance wouldn't touch. She was conclusively diagnosed with the largest of the deletions which also has a replication. As I understand it, this replication is a good thing and is what helps her health.

At diagnosis, she was on a diagnostic steroid treatment for a disorder they didn't think she had which caused a staph infection in her throat. It went undiagnosed for nearly a month at which time we spent the two weeks of Christmas and New Years in the hospital. It has been an uphill battle recovering from that and other hiccups but she has actually been quite health for a Pearson's child.

I would like very much to gather as many of us together to share information with each other. Sometime in the future, I would like to bring a doctor in to help gather our information and make it more public for others to find.

I hope that we can exchange information either through my Yahoo group or e-mail with more steady interaction than what I've had in the past.

Thanks for reading.

Kathryn Burroughs

momofsaa7@aol.com