Calista - Canada

Hi, 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.

When 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.

We 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.

We 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.

My 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.

Now 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.