I am a Canadian mother of a three year old daughter, diagnosed
with GT. I was so happy to find this website. I know now, that
we are not alone.
Calista was born she started breaking out with pin point bruising
on her feet, then on her face, then actual bruises from petty
bumps, and even from picking her up from underneath her arms.
We knew that something was wrong so we took her to our pediatrition.
They took several blood tests but could not find anything wrong
other than a slight abnormality in her hemogloban. She was put
on an iron suppliment. Soon, after all the testing, we noticed
her umbilical cord would not heal, and it became infected. At
two months old, she had surgery due to the infection, which caused
an asist in the ambilical cord, spreading feelers towards the
kidneys. Thank God it was found on time. She recovered well and
the bruising seemed to subside, but only weeks later it returned.
went back for more testing but the doctors could not find out
what was wrong. Two years went by and I found my self a good job
in Weyburn, along with work came daycare. I was worried because
I had been a stay at home mom all this time, but I explained to
the daycare provider of Calista's condition, which not yet been
diagnosed. Six months later I had gotten a phone call at work
from the police and social services just minutes after dropping
my daughter off at daycare.
were taken to the police station were they made us strip our daughter
of her clothes while they took photos of her nude body, even though
I had the lab work papers on me proving that we had been looking
into our daughters condition. We sat in a room for hours before
being taken to a hospital for further investigation, finally they
started looking into our medical records and we were released
with no apology.
spouse and I were ready to go completly crazy. I had gotten very
depressed and felt humiliated. Everything we had gone through
and still no diagnosis. Finally april of 2005, we got a phone
call from our blood specialist to tell us of the GT diagnosis.
Since then our file of child abuse alligations has been closed.
My daughter will be four this Sept. We have been trying all that
we can but this March of 2006 she had a nosebleed that lasted
for days. Nothing we did would stop it. On the third day we thought
it had quit however it was actually running down the back of her
throat. She was rushed by ambulance to the hospital, when we got
there she started puking out large amounts of blood and clots.
She started going lathargic and turning white a ghost. She ended
up getting a blood transfusion and a platlet transfusion. Then
a needle to restrict the viens in her nose to stop the bleeding.
we are back at home and we are okay, but she has been awfully
pale. I worry so much about her future, and whats next to come?
Thank you for taking the time to read about my daughter. Please
keep telling of your life experiences because it helps knowing
we are not alone.