Anna's Story: Rare disorder leaves girl with unknown future

Families with children have no shortage of things to do. From laundry, getting them to practice, to just the daily routine – something always needs attention.

It’s the same for parents of children with special needs, however, their check list is filled with items much different.

Aaron and Stella Smith's now two-year-old daughter Anna was diagnosed with a rare genetic disorder called “Chromosome 18, deletion of the short arm” when she was just three weeks old. It was actually welcome news to Aaron and Stella, who had started preparing for the worst in the days and months before she was born.

“We had no clue what was going on. We didn’t even know if she was going to live after she was born” according to Stella.

The good news: Anna didn’t have a different, more devastating genetic disorder doctors were concerned about. The bad: she still had a long list of serious issues to contend with.

“She has 13 doctors, and when she does get ill, the appointments stack on each other,” said Stella.

It wasn't long ago when Anna spent more time at the hospital than she did at home: 19 stays averaging three to four nights each.

In her 24 months of life, Anna has gone through more medical procedures than most people experience in a lifetime, including having a kidney removed, and open heart surgery when she was just five months old.

Stella says raising a child with special needs is challenging all around, but some of those challenges are much more difficult than others. “The hardest part is having to hand her over to the nurses and let the surgeons do their work.”

While doctors were able to fix Anna's faulty heart valve, there's still a lot of unanswered questions about how Chromosome 18 will affect her as she contunes to grow and develope.

"Nobody can give us for sure answers. They can't say yes she will be able to talk, or yes she will do this -- it is still up in the air," said Stella.

There is hope for Anna thanks to TARC, a Topeka Based non-profit who serve developmentally disabled adults and children.

Twice a week, a team of physical, occupational and speech therapists work with Anna's needs, providing support, tools, and even toys to brighten her future.

"She has this little car that she gets in and takes off in. She loves this car and thinks it's funny to go after the dog and her brother," said Stella.

"We'd be lost with out them. They have shown us so much, and educated us," according to Anna's father Aaron.

Proceeds from Chris Fisher's "Sporting Clays for Kids" fundraiser will once again benefit children like Anna served through TARC's Children's Service Programs.

Hundreds of area children (and their families) benefit from TARC's wide array of services, and it's all free of charge to they serve.

The 8th Annual Sporting Clays for Kids is Saturday, August 19th at Ravenwood Lodge. Shoot times are from 8 a.m. to 11 a.m. with breakfast served by Henry's BBQ Grill, and lunch from Chef Alli.

You can support TARC by participating in the shoot, or making a secure online donation here: www.tarcinc.org/justabuck.

Aaron and Stella say they had no clue what TARC did until their family needed them, which is the case for a lot of parents who suddenly find themselves with a special needs child.