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Rainny’s Story – Home Run for Life

RainnyJust a few weeks after she was born, Lorraina Doolittle was expected to only live for a handful of hours after being hospitalized when both her heart and lungs failed. “Rainny,” as she prefers to be called, survived the crisis.

Soon after, at just six weeks old, Rainny was diagnosed with mitochondrial myopathy. This disorder stops or reduces the energy that’s created in the body’s cells, causing fatigue and muscle weakness. Unable to speak, Rainny is also challenged by cerebral palsy, vision and hearing impairments. Her family learned she might not live to see her third birthday… then her fifth birthday.

Rainny-and-Cora

Rainny (left) with big sis, Cora.

And now, at age 8, she’s still proving everyone wrong.

“Rainny has an intense personality,” says her dad, Ryan Kazmierzak. “Sometimes people see her and they see the disorder, but that’s not her. She is a strong-willed child.”

Working with a team of therapists at Memorial Children’s Therapy Center, Rainny continues to gain strength. She’s also using an electronic tablet loaded with images and words, giving her a way to communicate with others. Rainny’s mom, Sarah Doolittle, says she has really taken off with the device. One of the first things Rainny let her parents know was that she did not want to wear pink.

“We sort of knew she wasn’t a ‘pink’ kind of girl, but it was nice to hear it,” Sarah says.

Rainny-with-bubbles

Rainny with Carol Voor Graham, M.A., CCC-SLP, Pediatric Speech-Language Pathologist, Memorial Children’s Therapy Center.

Because she has a low-functioning immune system, Rainny isn’t able to go to places kids usually go with their parents, such as to the grocery store or mall. So making the trip to Memorial Children’s Therapy Center is a big deal, and Rainny is always excited and ready to go.

Having her speech, occupational and physical therapists close to home is “life changing” for Rainny, Sarah says. Her family cherishes each day spent with Rainny, celebrating what’s really important in life and marveling at her sheer determination.

 

About Laura Bailey

Laura is a communications specialist at Beacon Health System. She enjoys sharing stories with the community about the talented team members at Beacon and winning against the computer in Scrabble.