Shepard has a rare genetic condition called 1p36 deletion syndrome. He suffers from many of the complications of the disease including low muscle tone, difficulty in swallowing and breathing as well as heart problems, said his grandmother Mary Fredriksen, his caregiver. In addition, he has kidney disease but is unable to go on dialysis because of his heart condition and his seizures, she said.
“He never walked,” Fredriksen said. “He never talked.”
Dallas can communicate in other ways, his grandmother said. He lifts up his shirt to uncover his feeding tube when he is hungry, waves bye, he nods yes and shakes his head no, Fredriksen said.
Because of his medical conditions, he spends much of his day being moved from his bed to his grandmother’s lap to a recliner, Fredriksen said. But Dec. 7 through Dec. 12, Dallas and Fredriksen, along with Bridget and Austin Shepard, Dallas’ mother and 10-year-old brother, went to Pigeon Forge and Gatlinburg, Tenn., courtesy of Make-A-Wish Alabama. Fredriksen said the trip incorporated Dallas’ greatest loves: pretty scenery and music.
A difficult life
Dallas has lived with his grandmother since he was 6 months old, she said. He was diagnosed with the rare syndrome – experts estimate 1 in 5,000 to 10,000 newborns are born with the genetic disorder – when he was very young, Fredriksen said. But despite being born with a heart condition, Dallas was healthy until he was 4 years old.
“At 2, they expected him to have a good life,” Fredriksen said.
But at age 4, he could no longer swallow and had to start using a feeding tube. At 9, he had to have a tracheotomy to help him breath. At 10, he started having problems with his kidneys.
Today, Dallas requires 16 medications and a myriad of medical equipment including a wheelchair, humidifier with a heater, pulse monitoring machine, and a suctioner for removing mucus from his lungs. She has to use a catheter on him every three to four hours because his kidneys don’t work properly, Fredriksen said.
Her former living room now houses a hospital bed for Dallas, surrounded by his machines. Next to it is a bed for her. She wants to be close enough to hear if he’s having a seizure or some other problem at night, she said.
Nearby are two child-sized recliners, a sofa for her and a television for the family.
“I had to turn my living room into a bedroom, living room, dining room and bathroom,” Fredriksen said.
A necessary break
Pam Jones, president and chief executive officer of Make-A-Wish Alabama, said Dallas was a perfect fit for the program.
The organization serves Alabama children between the ages of 2 ½ and 18 with a life-threatening illness.
Make-A-Wish Alabama accepts children whose parents or caregivers contact them, Jones said. In this case, Fredriksen said Dallas’ social workers told them about the program.
The Alabama chapter granted 130 wishes last fiscal year and is on its way to granting 140 this year, all funded through the donations it receives, Jones said. But the organization is only just scratching the surface, she added.
“Every year, somewhere in our state over 400 children are predicted to be diagnosed with a life-threatening condition,” Jones said.
She believes the trips are more than a respite for the family, because a patient’s morale can have a positive effect on their health, Jones said.
“I can’t tell you how many times a parent, grandparent or caregiver has said that’s the first time I’ve seen him smile since he was diagnosed,” Jones said.
Easing the burden
Taking care of Dallas is a 24/7 job, Fredriksen said. She quit her job when he had to have the tracheostomy put in in 2009, the grandmother added. It’s meant the family has to live on just $710 a month despite large medical expenses and costly electric bills that reflect the operation of all his equipment, Fredriksen said. But it’s a decision she doesn’t regret.
“He’s my precious, little baby,” Fredriksen said.
But it means that trips like the one from Make-A-Wish were out of reach for the family and she’s grateful for the opportunity, she said.
They were able to enjoy the Christmas lights, three concerts at Dollywood, an evening at the musical dinner theater Dixie Stampede, the Smoky Mountain Opry and Ripley’s Aquarium of the Smokies, Fredriksen said.
“The trip itself was unbelievable,” Fredriksen said. “He loved it. His little ol’ eyes was just a glowing.”
Dallas’ mother said the trip was the first one she had been able to make with her sons and she had never been to Pigeon Forge herself.
“I was very happy because we got to experience something together for the first time,” Shepard said.
To contact Make-A-Wish Alabama about a trip for a child or to donate, call 205-254-WISH (9474) or visit http://alabama.wish.org.
Staff writer Laura Camper: 256-235-3545. On Twitter @LCamper_Star.