GT Story from Maryland
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
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.
my concerns up to the pediatrician who thought that his
bruising was normal due to being fare complected (We are
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.
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.
decided to go for it. We had Hannah in May of 2005. She
too has GT.
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.
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.