Spotlight on AHC Champion Olivia (Minnesota, USA)

Spotlight on AHC Champion Olivia (Minnesota, USA)

This month we feature Olivia, from Minnesota. Her story is told by her mother, Shena Harrison.

oliviaOlivia was born August 6, 2003, with her eyes wide open, looking straight up without not one tear in her beautiful brown eyes. We went home a few days later not knowing how our world would change forever.
By 6 months Olivia had not reached any milestones but one; she was barely holding her head up or babbling. The Children’s Hospital started a large workup on Olivia at about 6 months, and the doctor said she had left hemiparesis and that her progress would always be delayed. Olivia started walking by two and a half. It wasn’t the best, but she started doing it. For 5 years Olivia worked hard on her speech, walking, and dealing with these strange episodes which would cause her to sleep 10 to 15 hours a day.
This journey took us to Rochester Mayo Clinic to see many different doctors, including a neurologist and a geneticist. For many years they thought it was seizures, so Olivia was on many medications that did nothing to make the situation any better.
Four years ago Olivia started falling more and more. We went in to see her pediatrician who ordered a CAT scan. After that she told us Olivia needed to have an MRI immediately. After the MRI was done we were told that Olivia needs to be an inpatient at Children’s Hospital after a week in the hospital we were told that Olivia’s brain has shrunk with no reason why, so we started a new journey. Olivia’s done so many work ups from here in the twin city’s and the mayo clinic and they decided that they could no longer be of any help and referred Olivia to Children’s Hospital Philadelphia. so for the last few months Olivia has had a few week long trips to CHOP in hopes that they will come up with answers. As of today on FEB 2015 Olivia has a undiagnosed brain disease and intractable epilepsy. Olivia was dignosed last year in September of 15 with AHC and went to see dr m at Duke where we learned that Olivia at that time was the only person with the d801h strand of AHC. TILL this day our goal is to keep Olivia happy and healthy.
Contact Us

We're not around right now. But you can send us an email and we'll get back to you, asap.

Not readable? Change text. captcha txt

Start typing and press Enter to search