Dwarfism doesn’t stop Jill and her mom
Jill Martin, and her mother Wilma Martin, of Greencastle, don't have a local support group, but they have developed friendships all across the United States. And they are in sync with Little People of America (LPA) to spread the word about October National Dwarfism Awareness Month.
Jill, 32, has the mucopolysaccharide disorder called Morquio Syndrome. The lack of an enzyme means she stopped growing at three feet, and has had problems with her joints, eyes and ears. She has spent 60 hours in surgery through the years, including a spinal fusion, and procedures on her hips and knees. Today she suffers with pain in her hips but there is nothing to do to alleviate it except medication, and she has spinal core compression. That is being watched.
The Martins don't have connections with other area families dealing with the issues of any one of the 200 forms of dwarfism and skeletal dysplasia, so they understand local citizens won't know much about the conditions. They keep in touch with faraway families they have met at hospitals, at conventions and by other means. And even in those cases, they find some segregation. Jill's case is so rare, that at national LPA gatherings, only a handful of the 2,500 attendees have Morquio. Each dwarfism group tends to meet up with others with the same diagnosis. The most common form is Achondroplasia.
Wilma's pregnancy with her second daughter was normal, and it was not until Jill was three that she and her late husband realized something was wrong. It took a skin biopsy at National Institutes of Health to diagnose Morquio.
"It is usually genetic, but there was no family history of this," said Wilma.
Jill attended kindergarten through eighth-grade at Shalom Christian Academy, then went to Franklin Learning Center until age 21, when she graduated. She volunteered for 10 years at the center, working with the preschool teacher. Much of the time she read to the children.
At about 12-years-old, Jill and Wilma went to an LPA convention in Atlanta.
"I was scared to death," Jill remembered. "It was overwhelming."
Later conventions were more fun. Wilma noted that all of the activities were geared toward the little people, so those of normal height were "odd man out."
Jill was in and out of hospitals, and lived in one in Baltimore for six months. It was not a favorite memory.
"You can only eat so much hospital food."
She used to be able to walk comfortably, but now uses a walker. Three wheeled chairs help her get around. The newest is a power chair from the family of a Morquio friend who died. He lived in Tennessee, but getting the unit to Pennsylvania was an obstacle.
Wilma's daughter Angela and her husband Mike Snavely live in North Carolina, and his employer Food Lion Distribution offered to go to Nashville, pick up the chair, and deliver it to the Martins' door.
It took some time with driving lessons, but Jill said, "I'm getting used to 'The Beast'."
Jill's long-time physician died, so now they are searching for someone else who can perform operations on her.
"That's been part of our journey," Wilma said. "One surgeon in Philadelphia doesn't have as much experience, and he is hesitant."
The next needed procedure runs the risk of serious complications, so they are waiting and watching.
Jill is most comfortable in her stuffed chair, leaning forward on her arms at the end table, legs sprawled up and behind her. It is easier to breathe that way. She likes to be on her computer, with Facebook. She also does crafts, using Perler Beads or creating candle toppers to sell.
Proceeds are always given to a charity, such as LPA or Haiti missions.
Life in Greencastle has been good. On outings, people stop to chat all the time.
"They know me but I don't know them," Jill grinned.
Wilma praised the residents.
"The community has been extra accepting and kind."
She recalled a time when Jill needed units of blood banked for a surgery. AIDS was a big scare, and her doctor only wanted to use blood from people the family knew. Several volunteered to donate blood just for Jill. Others have raised money to help with her medical expenses.
She enjoys watching reality TV shows. "The Little Couple" features Bill Klein and Jennifer Arnold and their kids in Texas. "Little People, Big World" is about the Roloff family in Oregon. The Martins have met the celebrities at conventions.
The two agree there is some truth to the staged shows, because people with dwarfism are as diverse as the general population. Though Jill is disabled, not all little people are. However, Wilma said they did tend to have difficulty finding jobs and finances became a struggle.
LPA started National Dwarfism Awareness Month in 2009 to raise positive awareness, address common misconceptions and increase opportunities for people with dwarfism. The organization defines dwarfism as people not taller than 4 feet, 10 inches, though the typical height range is 2 feet, 8 inches to 4 feet, 5 inches. In the United States 30,000 people have dwarfism and internationally the number is 651,000.
For the past five years, LPA has declared the word "midget" inappropriate and offensive. While a person's name is most preferred, other acceptable terms are: average-height, having dwarfism, short stature, little person, lp, and the medical term dwarf.
LPA itself was formed by actor Billy Barty in 1957. He had a long career in movies and television. He challenged society for mislabeling and not understanding people of short stature.
As part of the awareness, Wilma wants people to feel free to talk to them. They have enjoyed some encounters with strangers.
Once at the mall in a purple wheelchair, Jill was the focus of a little girl. The child walked up, crossed her arms and said, "I'm going to have to get myself one of those."
At Mikie's Restaurant, protective sister Angela spoke to a little boy looking at Jill. "She didn't eat her vegetables," she told him.
Wilma laughed at the recollection. The lad's eyes grew big. She wonders if that statement affected his eating habits.