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Joanne Susi

"My life is separated into before and after. Before, I was a Senior Clinical Research Associate assisting in clinical trails with CAP working with Dana Farber, Tufts, Johns Hopkins, and others in Cancer research. Now I am a survivor and lucky to be alive". Read Kristin's story

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Kristin & IsabellaKristin & Isabella

"She’s come really far … but she has a long journey ahead of her, but we’ll take that together, too."

On the morning of Nov. 25, 2010, it seemed like any other Thanksgiving Day for Kristin Olliney and her four-and-a-half-year-old daughter Isabella. However, it was on that day that their lives changed forever.

“She was fine all day,” explains Kristin. It wasn’t until 7:00 that night that Isabella started “screaming” that she had a migraine and needed to throw up. By 10:30 she was confused and dehydrated. Twenty-four hours after Isabella had complained of a migraine, she was “crashing and literally dying” at the hospital, explains Kristin. Isabella had come down with sudden acute encephalitis.

“Everything happened in an instant,” she says. Isabella was in a drug-induced coma and then her own coma. “When she finally woke up, she was like a newborn,” says Kristin. “She couldn’t lift her head up.”

The brain damage caused by sudden acute encephalitis has caused Isabella, who was once advanced for her age, to be developmentally and behaviorally delayed and to have seizures, tics, migraines, anxiety, symptoms of ADHD, mood disorder, aggression, OCD, sensory issues, depression, learning disabilities, visual and audio misperceptions, cognitive disorder and separation anxiety. Additionally, she could not walk or even move her arms and legs at first.

Despite doctors’ beliefs, Isabella survived. “My daughter is the one-in-a-million to survive and she truly is a miracle,” says Kristin.

Isabella spent nearly a month in the hospital, which included the time she was hospitalized for sudden acute encephalitis, as well as in-patient rehabilitation. Kristin says that she was never told how much rehabilitation would be needed or of the long journey they had ahead of them.

“I thought when we got out of the hospital, in six weeks life would be back to normal,” she says. Brain injury “is a life-changer. It’s not like a broken bone.”

After Isabella got out of the hospital, she started receiving out-patient therapy, including speech, occupational and physical therapy. She now receives behavioral therapy as well. Isabella has also had 80 hyperbaric oxygen treatments, a therapy which Kristin believes all brain injury survivors should have access to. The hyperbaric oxygen treatments have helped Isabella sleep through the night, remember life before her injury and with empathy,” Kristin says.

“She has made progress,” she says. “She’s so determined.” Although doctors wanted to put her in a wheelchair, Isabella refused and instead, learned to walk again. A year ago, she couldn’t put four words together and now she’s able to form sentences.

“She’s come really far … but she has a long journey ahead of her, but we’ll take that together, too,” says Kristin, who refers to her and her daughter as Team Isabella. With Isabella’s determination, their “team” of doctors and the combination of therapies and medication, Kristin has hope that one day her daughter will be able to do everything she dreams of, like being a “pet doctor.”

“I just want her to be happy and for her to do all the things she wants to do,” says Kristin. “I’m not settling for her. She works so hard [every day] which makes me work even harder.”

 

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