Carson City girl faces impairment with dignity and a smile

When Kaitlyn Francone smiles, she lights up a room.

Fluid and effortless, her smile is miraculous considering that she is often too weak to hold her head up without help.

Kaitlyn suffers from a form of Muscular Dystrophy, her mother Kristyn Smithwyck said, but the medical community hasn't been able to identify which type.

"Every doctor we have seen so far has been unable to diagnose exactly what type," she said. "Muscular Dystrophy is like is an umbrella, and we don't know which part it is under."

Kaitlyn's father, Anthony Francone, said that although his daughter's symptoms are obvious, the pathology of her condition has stumped even the upper echelons of pediatric medicine.

Finding a genetic answer to Kaitlyn's impairment that can identify its origin has proven to be the most significant stumbling block in her treatment.

"They've tried many times to diagnose. It seems like every time they think they've got their finger on something, they're able to rule it out rather quickly," he said. "At one point, we had one of her doctors tell us that they got 300 of the most brilliant minds in pediatric medicine in a room together one day and discussed her case. They still came up with nothing."

Smithwyck said she knew something was wrong when Kaitlyn was about nine months old. She wasn't meeting some of her developmental milestones, such as crawling, pulling herself up into a standing position, and being able to stand without her legs going limp. Her feet, both parents noticed, were constantly in a drop position, too.

"We couldn't get a doctor to do anything until she was 17 months old," Smithwyck said.

Since then, Kaitlyn has had two brain magnetic resonance imaging (MRI) scans, a spinal MRI, a muscle biopsy, three electromyographies (EMGs), one electrocardiogram (EKG), a spinal tap, x-rays and numerous blood draws.

She has also been enrolled in physical therapy since the age of 18 months, Smithwyck said.

Kaitlyn travels to Stanford University in Palo Alto, CA, regularly for medical diagnostics at Lucile Packard Children's Hospital.

Throughout the ongoing process toward diagnosis and treatment, Kaitlyn smiles. She laughs. She acts like any other child and has the interests of other girls her age.

But her parents know that her journey will be lifelong, and as she grows, she will develop greater needs to achieve functional independence.

Kaitlyn, like any other child, is also constantly growing. At about 65 pounds and a little over four feet tall, she is close to outgrowing her manual wheelchair.

"She's getting bigger," Anthony Francone said. "Right now we can still carry her, but she's getting heavier to lift and we aren't getting younger, either."

Her parents recently invested in an electric power chair for their daughter, knowing that she would need it in the near future anyway.

Smithwyck said that not only will Kaitlyn grow out of the manual chair and into the power chair, but her hands and arms are getting progressively weaker. Eventually she won't be able to propel herself manually.

Kaitlyn has been training for the transition to a power chair through her physical therapy program at Al Seeliger Elementary School in Carson City, where she is currently attending the fourth grade.

"We've been working with her physical therapist at the school, training for a couple of years to learn how to drive a power chair and not run people over," Smithwyck chuckled. "She finally has gotten good enough where they would sign off and we could get her the new chair, so she can have more independence."

Kaitlyn got her chair, but it comes with significant adjustments and challenges for her parents.

The power unit is very heavy, her parents said, weighing about 340 pounds. This isn't something that can be folded up and lifted by hand. Hydraulic or electrical power lifts are required to load the chair inside of a vehicle.

Her parents still have to lift her out of her chair and place her into her car seat, too.

Smithwyck and Francone agreed that a separate wheelchair-accessible van with cabin space for Kaitlyn's power unit would be ideal. But they also realize its high costs.

At this point, they would be happy just to be able to afford lifts to transport the chair and ramps to accommodate it into their houses.

Appropriate accommodations for Kaitlyn's power chair can easily reach from several hundred into the thousands of dollars.

"Ramps and lifts right now are the greatest need for Kaitlyn," Smithwyck said. "Otherwise there's no way to get the chair into the house."

She said any assistance Kaitlyn can get from her friends and neighbors in the community would go a long way toward helping her achieve accommodations for her new power chair.

"I'd be willing to have people donate materials and volunteer to help build a ramp into our house," Smithwyck said.

Portable ramps and a lift are also sought for Kaitlyn when she is with her dad.

"With the power chair comes equipment," Francone said. "There are other things we may have to look at as well, like widening her bedroom and bathroom doors, and installing grab bars in the bathrooms so that she can be a little bit more maneuverable."

As for Kaitlyn, she is looking forward to doing what 10 year-olds do from her new power chair. This includes participating in physical education (PE), her favorite school subject.

Her parents said Kaitlyn loves to kick the ball in PE class. She is also still able to crawl using her arms and hands, they said, but she is getting weaker in her upper extremities.

The transition to an electric power wheelchair was inevitable, they said.

But Kaitlyn is unaffected by the need for more accommodations to help her function. She remains a happy, smiling child who laughs and plays as though there's nothing unusual about her life.

"She is the most beautiful, outgoing person I've ever met," Smithwyck said. "She deserves to be as comfortable as possible, and if that includes getting the ramps into our homes so she can get around better, she deserves it."

Dad Anthony Francone agreed, adding that Kaitlyn's courage amidst her challenges is an inspiration deserving of notice.

"She is easily the bravest person I've ever known," he said.

When asked about the prospect of getting help from her community to afford the accommodations she needs to function inside her parents' homes, Kaitlyn quickly broke a smile, her eyes heavy from fatigue and her head resting against her dad's shoulder.

"That would be cool," she said.

Go here for a fund established for Kaitlyn.