by his mom, Shannon
born April 25th 2006 - has had a very hard life so far.
Beautiful baby boy-so sweet.
birth, he vomited both breast-milk and his formula up,so
the doctor switched about 5 times and then the rectal
bleeding started (at one month old). No one knew what
was wrong with him - he just kept bleeding and bleeding.
Transferred from one hospital to another. Finally we
were sent to MUSC in Charleston (our guardian angels).
he was diagnosed with bleeding ulcers and allergies
to both milk and soy. After countless platelet and
blood transfusions, a hematologist finally discovered
he had GT.
had no idea what that meant at the time. I was so
happy to have an answer as we had been in the hospital
for over a month. I did some research when we got
back home and realized that we were in for a fight,
one I didn't plan to lose.
of the hardest parts to deal with is the constant stares
and very often rude questions or remarks. One brazen
lady even took a photo of him on her phone!
has been in and out of the hospital for almost 5 months
total in his short 21 month old life. He has severe
asthma, acid reflux disease, been diagnosed with the
severe form of GT, had brain surgery for hydrocephalus
and chiari (almost lost him again). He has had countless
bouts with infections (ear and skin), RSV, bronchitis
and MANY nosebleeds and rectal bleeds.
have just found out today that he has an inguinal hernia which
must be operated on this coming week and I ask for everyone's
prayers. I hope that a cure is found soon for our babies.
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No treatment of GT should be undertaken without medical
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