GT Story from Maryland

Hi Helen,

First I wanted to thank you for your wonderful website. Whenever I am having an emotional moment I always go to the site to get inspiration.

My name is Heather. I wanted to tell the story of my two beautiful children, Reilly and Hannah. When my son Reilly, age 3 was born, he had mild bruising that the doctors thought was due to traumatic labor. I noticed that after his immunizations, he had long bleed times and then at about 5 months old, I noticed he seemed to bruise alot and for no apparent reason.

I brought my concerns up to the pediatrician who thought that his bruising was normal due to being fare complected (We are Irish).

I pushed the issue until they finally referred us to a hematologist. He was finally diagnosed with GT at 11 months old. His first year was a roller coaster. We made a few trips to Children's Hospital for nosebleeds and one bad fall.

He to date has had 1 platelet transfusion, a few doses of novoseven, and countless doses of amicar. Reilly is so active and such a boy, it's so hard to keep him still. He likes to take flying leaps across toys, he loves football and baseball and just runs non stop. When he was 15 month old, I really wanted another baby. Reilly and Hannah have two half sisters who come to our house on weekends, and at this time whenever they would leave he would cry for it seemed hours and always missed them and asked for them.

It was then that I spoke to the doctors and they said that there was only a 25% chance that any of my children would have this disorder.

I decided to go for it. We had Hannah in May of 2005. She too has GT.

I think I have managed with her much better because I have my experiences from Reilly. I don't know what stage of GT they have but based on what I have read, I believe it is stage 3 only because so far I have only had to deal the head to toe bruising and nosebleeds. I get alot of stares and people blurting out in the middle of the grocery store "What happened to your baby" . I have had 1 visit from social services.

Everyday is an adventure to say the least. I try to be positive and be grateful that it is not worse. I really want to thank you and Gretchen, the mom of Aidana and Aidan. I spoke to Gretchen once on the phone when Reilly was born and also after I had Hannah. She is so hope full and inspiring. I actually talked to you around the same time when Reilly was born just trying to get more information. Your website is such an inspiration and makes me hopeful that one day there will be a cure. Thank you so much.

Heather Moulton

Email Heather

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