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December 12, 2012

Drive honors 4-year-old

Marissa Schoenradt to receive bone marrow transplant this month

LOGANSPORT — At just 18 pounds and 31 inches tall, Marissa Schoenradt looks like a toddler, but she’ll turn five years old in about a month, said her mother, Courtney Schoenradt.

The girl has dwarfism, Schoenradt explained, because of a disorder called cartilage-hair hypoplasia that she was diagnosed with just before turning 2.

Now a student in Fairview Elementary School’s preschool program, Marissa has also been diagnosed with Hirschsprung’s disease, a congenital condition that affects the large intestine.

Together, Marissa’s conditions have triggered a variety of medical problems — gastrointestinal difficulties, diminished immune system function and anemia, to name a few. The girl has had six surgeries since birth.

But Schoenradt, 28, hopes her daughter’s seventh surgery this month will take care of some of that.

The little girl with the teacup voice — Schoenradt compares it to that of Mini-Me from the Austin Powers movies — will soon undergo transplant surgery at Riley Children’s Hospital in Indianapolis to correct some of her medical ailments. The pair set out for at least two months at the hospital this week for preparatory work and about six weeks of recovery.

Marissa will receive a bone marrow transplant using donated umbilical cord tissue on Tuesday, or “Day Zero” as Schoenradt calls it. Before that, she’ll undergo five days of chemotherapy to prepare for it.

Fairview Elementary School will host a bone marrow donation registration drive in Marissa’s honor from 6 to 8 p.m. Friday during its family night. Although transplant tissue has already been found for Marissa, many other Indiana children who need a bone marrow transplant still await a donor match, according to promotional material for the event.

The registration drive will allow potential bone marrow donors to complete paperwork and have their cheek swabbed for matching purposes.

For Marissa, the transplant should correct many of the gastrointestinal issues she’s experiencing as well as restoring her blood’s white cell and iron counts to normal.

“She probably won’t need any of her medicines” after the year’s recovery period is up, said her mother.

That means no shots to boost her white blood cell counts and no intravenous treatments to otherwise help her immune system. Marissa will like that, because like many children, she’s no fan of needles.

“If you mention lab, bloodwork, she’ll go straight into panic mode,” her mom said.

Her small stature has required a few modifications around the house. There are narrow PVC pipes attached to light switches so she can reach to turn them on and off. She sleeps in a bed the size of a crib, and last year, a local bike shop owner assembled an 11-inch-tall tricycle small enough for her to ride.

“She is actually kind of bright, but she also has the attitude of, like, a 2-year-old,” said Schoenradt. But “she has the most amazing imagination,” she added, holding tea parties with her toys and playing other make-believe games.

She’s also a precious daughter.

Sometimes Marissa will ask her mother, out of the blue, if she knows how much Marissa loves her, recounts Schoenradt. Mom will ask in return, “how much?”

And Marissa will answer, according to the family fashion, “big much!”

She’ll return to dance lessons as soon as her doctor gives her the go-ahead. In the meantime, said Schoenradt, Marissa will keep doing some of the dance moves she’s learned — including standing on her head and landing backwards without injuring herself — to maintain flexibility in her limbs.

Once the first phase of recovery from the transplant is complete, Marissa will return home, but she’ll still be inordinately susceptible to disease for several months.

An instructor from Fairview will make home visits this coming spring to teach Marissa while her immune system is delicate. As it grows stronger, she’ll work toward being able to attend kindergarten in the fall with other children her age.

She won’t be quite their size, of course. She’ll still have the chipmunk voice and the stature of a toddler.

Sarah Einselen is news editor for the Pharos-Tribune. She can be reached at sarah.einselen@pharostribune.com or 574-732-5151.

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