Four-year old Kaylee Sowards has defied incredible odds. Her parents, Pamela Sue "Suzie" and Brian Sowards, want to be able to take their little miracle with them wherever they go.
With a wheelchair-accessible van, the growing family could transport Kaylee in her bubblegum-pink wheelchair.
Kaylee has the light-up toys and cuddly stuffed animals any toddler might own. But a breathing machine and the rack that holds her feeding tube are also a part of her daily life.
Kaylee was born with Trisomy 18.
According to the Trisomy 18 Foundation, about one in 3,000 babies is born with the condition. The chromosome disorder is usually fatal; babies who are born with it rarely live more than a few days. The lucky ones -- less than 10 percent -- live to see their first birthday.
She can't walk or talk, but Kaylee is learning to communicate through a special touch board. She works with speech, physical and occupational therapists. She also has three nurses who spend about 60 hours per week with her.
After a few battles with pneumonia this winter, Suzie Sowards said she thinks Kaylee is getting stronger.
The family has a car that can only hold three people in addition to Kaylee and their one-year-old son, Kameron.
"It's really hard for all of us to go somewhere together," she said.
"We always want to do stuff, but we can't," said Karrie Stacy, 17, Kaylee's sister. A junior at Sandusky High, Karrie is taking classes to become a certified nurses' aide.
The family hopes to raise $28,000 for a wheelchair-accessible Chrysler Grand Caravan.
Andrea McKillips, one of Kaylee's nurses, said a van that could hold Kaylee's wheelchair would help her be less confined to her home. If the family had a van, Kaylee could go to church, doctors' appointments, the park, the zoo and even start school.
"What a little girl her age should be able to do," McKillips said.
Kaylee will turn 5 years old on Feb. 26. Some doctors said Kaylee would never survive past her first birthday.
Her father, Brian, works at Ohio Veterans Home and is especially protective of his little girl.
"He'll wear a mask at work because he doesn't want to get her sick," Suzie Sowards said.
After the winter cold and flu season has passed, Kaylee will have surgery to close the hole left her in throat by a tracheal tube that was removed two years ago.
Her speech therapist hopes that once the hole has been closed Kaylee may be able to eat on her own.
Spaghetti Dinner Wheelchair Van Benefit for Kaylee Sowards
4 - 7 p.m. Oct. 27
Faith Memorial Church, 1320 E. Strub Road
Tickets are $10 for adults, $5 for children 12 and under
For tickets, call 419-625-6147 or 419-624-0091
Donations can also be made to the Kaylee Sowards Wheelchair Van Benefit account at any Citizens Banking Co. branch