Katie’s journey began in utero. We had several ultrasounds that were abnormal and we were sent to a specialist. That specialist tried to push us to have an abortion because of what they thought they saw on ultrasound. We made a decision at that moment that was not an option for us and changed obstetricians. We had many more ultrasounds throughout pregnancy and they were all normal! Katie came into this world a month early and very quick. She beat the doctor getting to hospital and was delivered by a wonderful nurse. When she was born she had a VSD and heart murmur and stayed a couple extra nights. Two months old she started having epileptic seizures, at four months old she went into heart failure and we almost lost her. Doctors did not have much hope she would live past her first birthday but here she is at age 18 and still proving anyone that doubts her wrong! She is getting ready to graduate high school, is a Frozen and YouTube fanatic, has a “boyfriend” and she just went to Prom! While she is in the hospital a lot because of medical conditions that have either been present since birth or new ones that have manifested over the last couple of years, she always overcomes like the warrior she is with a smile on her face. She is our HERO!
She was tested for several genetic disorders when younger but everything was coming back negative. It wasn't until we moved to Houston when she was 4 that we received her Monosomy 1p36 deletion diagnosis. From there we were directed to the 1p36 support group on yahoo, this was way before Facebook where the group is currently. We are so fortunate to have the love, support and to share this journey with our 1p36 family!