C.P. girl struggling against rare disease hopes to win special van

2014-04-07T19:30:00Z 2014-04-09T11:14:11Z C.P. girl struggling against rare disease hopes to win special vanDamian Rico damian.rico@nwi.com (219) 545-3980 nwitimes.com
April 07, 2014 7:30 pm  • 

CROWN POINT | Sophia Burns is fed intravenously, undergoes daily breathing treatments and battles seizures.

The 12-year-old Crown Point girl struggles from a rare disease known as Rett syndrome.

According to the National Institute of Neurological Disorders, the disease is predominantly found in females and is a gene mutation on the X chromosome that makes everyday functions difficult to nearly impossible, depending on the stage.

Sophia's is at stage IV, the most advanced, which has weakened her immune system, making her susceptible to life-threatening situations that most kids her age can overcome relatively quickly.

Still, on most days, the little girl with dark curly hair and big flashing eyes is all smiles.

Her strength and determination are amazing, said her mother, Mimi Burke.

Together, the energy of the mother/daughter team is almost off the charts, and that's one of the reasons they earned national recognition in a program called Local Heroes. It's a partnership between Toyota and Chrysler in which four handicapped-accessible vans will be awarded to four finalists who receive the most votes before a May 9 contest deadline.

Votes can be cast at http://www.mobilityawarenessmonth.com/entrant/mimi-burke-crown-point-in/

"Winning this contest would be life-changing for our family," Burke said. "But in all actuality, we feel we have already won because we are bringing about an awareness for this disease."

Burke remembers finding out about the disease when Sophia was 4 years old. She didn't know anything about the disease and had nowhere to turn. Since then, Burke has been on a crusade to bring the baffling disease to light and develop resources to help other families going through similar challenges.

"It's ongoing. We just got back from (University of Chicago Medicine) Comer Children's Hospital, which unfortunately has become a second home for Sophia," Burke said. "Last year, Sophia contracted meningitis, which became instantly life-threatening for her and very scary for all of us. Nobody should have to go through this."

Yet, mother and daughter stand together promoting Rett syndrome awareness. They have hosted numerous events and activities for Girl Power 2 Cure, an organization dedicated to Rett awareness and research.

"Our community has been wonderful and Mayor (David) Uran even created a proclamation last year hailing a special day in Crown Point for Rett syndrome and those battling the disease," Burke said.

To learn more about Rett syndrome, check out Sophia's page at www.girlpower2cure.org/Sophia

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