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A better life for Scarlet

Jenny and Tom Wagner have had their hands full with 3-year-old Scarlet, who was born with Schinzel Giedion Syndrome, and one-year-old Fritz, who has undergone treatments for eye cancer.

Jenny and Tom Wagner are like most parents. They want what is best for their daughter. In their case though, their hopes are a little more basic.

Their 3-year-old daughter, Scarlet, was born with an extremely rare genetic disorder called Schinzel Giedion Syndrome. The condition is complex and involves epilepsy, kidney disease, severe developmental delay, breathing and feeding issues and physical abnormalities.

Jenny said there are only 30 or 40 people worldwide that have been diagnosed with the condition.

It took three years for the family to actually get a diagnosis, and while it's nice to have a name, Jenny said little is known about the condition and Scarlet's future is uncertain.

What is known is that, Scarlet has no independent movement, which means she's confined to a wheelchair. The Wagners live in Rosemount. The couple has worked hard to modify their split-level home to fit their daughter's needs.

"We've adapted our lives to make it livable," said Jenny.

The Wagners installed a wheelchair lift down to their basement. Because that is where Scarlet spends most of her time the couple has put a lot of effort into making it a child friendly atmosphere. The walls of her bedroom are hot pink and stuffed animals line the walls. Owls adorn her bedroom door. A second brightly painted room serves as a play space. Spread throughout the normality, though, is medical equipment.

While the Wagners have made their situation work, it's still less than ideal. Scarlet's space is separated from the rest of the family space, and even with the wheel chairlift, it's physically challenging for Jenny and Tom to move their daughter.

"She deserves better. It would be nice to live and not have to struggle through everyday life," said Jenny.

Scarlet's story is only part of the family's struggles. In April 2012, Jenny and Tom welcomed their son, Fritz. Fritz was born with Retino Blastoma, or eye cancer. Since birth he has undergone a number of medical procedures including nine rounds of chemotherapy to treat the condition. Jenny said he's had two clean exams since his last round of chemo.

To care for her children's medical needs, Jenny was forced to quit her job. While it's been challenging, Jenny said it's been worth the sacrifice.

To accommodate Scarlett's needs the couple hopes to buy or build a wheelchair accessible home. A fundraiser has been planned to help the family. Currently the couple is looking for silent auction and raffle donations.

The fundraiser will take place from 2 to 5 p.m. June 2 at the Mediterranean Cruise Café. The event will feature a silent auction, raffle, food, vendors and more.

Donations also are accepted for the family at Wings Financial, 14985 Glazier Ave, Suite 100 Apple Valley, MN 55124.

Emily Zimmer
Emily Zimmer has worked as a staff writer for the Rosemount Town Pages since 2007. She has a degree in journalism from Minnesota State University, Mankato. Outside of work, Emily enjoys running, reading and gardening. You can follow Emily's gardening adventures at the Areavoices blog East of Weedin'
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