Jerry Lewis Telethon to showcase Henderson girl

By Jean Reid Norman

Thursday, Sept. 3, 2009 | 1:59 a.m.

Like most second graders, Haydan Leavins doesn't sit still very well on a sunny afternoon. While her mother talks, she moves from the living room of their Henderson home to the kitchen and back over and over. She gets water out of the refrigerator, plays with a video game, then heads to the kitchen and back to the living room for no apparent reason.

Unlike most second graders, Haydan is not running or even walking. Haydan, who has muscular dystrophy, is steering her new, motorized wheelchair.

The Newton Elementary School student will appear on the local feed of the Jerry Lewis MDA Telethon. She is scheduled to appear at noon Sept. 7, Muscular Dystrophy Association of Nevada officials said. Later in the week, she will celebrate her seventh birthday.

Her photo is being used at Clark County Vons stores, where her mother works, to help raise money in advance of the MDA's annual fundraising event. Melissa Dobar, her mother, recently was transferred to the Boulder City Vons store and has found herself answering questions of local residents who are just now getting to know of Haydan, who was the state MDA goodwill ambassador in 2007.

"They want to know who's the little girl. They ask me questions," Dobar said.

Diagnosed with the degenerative muscular disease at 18 months, Haydan has never walked. She has never stood, her mother said. The disease has progressed from midway up her calves to the middle of her torso. She has lost much of her appetite now and has a feeding tube to supplement what she eats. That has increased her weight from 22 pounds earlier this year to 31 pounds.

None of that is evident upon meeting Haydan, who recently got her ears pierced and loves Cinderella and Hannah Montana.

She shows off features of her new wheelchair. A control will raise the seat to make her almost eye level with her friends. Another tilts the seat forward and backward. Still another scoots her from room to room.

She smiles a lot but doesn't talk much to a visitor, and she stays on the go while her mother chats.

"She keeps you on your toes, I'll tell you that," Dobar said. "She's a lot more independent with this chair, because she can move around."

Dobar also remains positive, even as she explains the challenges that raising Haydan has presented. Haydan is one of six children in the blended family of Dobar and her husband, Matt, who will celebrate their first anniversary in December.

Haydan appeared normal at birth, but her mother noticed by her first birthday that she couldn't stand or walk, so she began a six-month-long process of getting a diagnosis. Doctors told Dobar her daughter had spinal muscular atrophy, a progressive form of muscular dystrophy.

"I was devastated. I didn't even know what MD was," she said. But she started reading up on the disease and got involved with MDA of Nevada.

"They are a big part of our family," she said.

Doctors tried leg braces and a walker for Haydan, but her legs were not strong enough, so she went into a wheelchair. Her first two wheelchairs were manual, Dobar said, because her arms were strong enough to operate them.

As the disease has progressed, her arms have gotten weaker, Dobar said.

Still, Dobar considers herself lucky in many ways. Haydan has needed only one surgery — to have the feeding tube inserted into her stomach — and she has not needed a regimen of medicines. The staff at Newton, where her daughter is in a regular classroom, work with Dobar to let her know if Haydan has been exposed to as much as a cold and give her the option of keeping Haydan home if something is going around.

"If she gets a cold, it's like if we get pneumonia," Dobar said. "She doesn't have enough strength to fight it off."

She also is grateful for help that strangers have offered. A local car dealership recently offered to buy the family a wheelchair lift for their car so they can take Haydan out. Currently the only place she is able to go is school, because the bus is equipped with a lift. Customers at the Vons in Boulder City also encouraged Dobar to set up the Haydan A. Leavins fund at the Boulder Dam Credit Union so residents can contribute to her medical costs.

Dobar says a family trip to Disney World paid for by the Make A Wish Foundation has given Haydan the memories of a lifetime.

And she is hopeful for Haydan's future. Doctors say if the disease progresses at its current rate, she could live into her 20s.

"I tell all my kids that Haydan probably will not get married, not have grandkids, but we don't know," she said. "I hope she has a future. I try to look at what we have now and make her as happy as possible."

And she hopes for a cure in Haydan's lifetime.

"We raise lots of money to find a cure," she said.