Baby Conner Suffers 100 Seizures Per Day At Times Because of Rare Condition
Updated On: Jan 16 2013 04:17:47 AM CST
Karissy Doty was told that her baby wasn’t going to make it because tumors were growing in his head and heart.
During Doty's pregnancy she was told that her baby boy would not survive after he was diagnosed with Tuberous Sclerosis Complex (TSC), a genetic disorder that causes multiple tumors to form in different parts of the body.
Karissa Doty nearly gave up hope saying, “I was planning on cremating him, so I was going to keep him next to me, next to my bed," said Doty...That was my plan. It was a constant battle [deciding] whether or not I wanted to hold him after he was still born."
Doty had lost all hope and thought she's never get to hold her baby when she was scheduled for an emergency C-section.
“Every time he was kicking me from the inside it just killed me inside because I knew that was the last time I would feel him kick me,” said Doty.
Then, something changed.
Doty said she remembered waking up after the surgery and hearing a nurse tell her that everything was okay.
She was telling me, "You have a perfectly fine baby. I was in shock!” Doty said.
Doty's son, Conner had made it through the birth, but the fight for life had just begun.
Now, at seven months old, Connor has a total of 19 tumors with 15 in his head and fourin his heart.
Conner now deals with a variety of seizures every day. His mother says that sometimes he has up to 100 of them over a 24-hour period.
The family has to take him to the hospital twice every two weeks, sometimes having to fly out to Sacramento by helicopter.
Doty says that there is no cure for TSC. Connor takes seven different medications to alleviate his symptoms but his future remains unknown.
Doty said her family just takes it "day by day."
“Conner is normal for Conner," Doty said, "He’s going to do what he needs to do when he needs to do it.”
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