Rilee Thurber Faces Dwarfism Head-On

February 27, 2015 tom@digitaldoowop.com
Rilee Thurber Faces Dwarfism Head-On | Birminghamparent.com

Medical issues faced by many with dwarfism create a special needs category.

Published: February 27, 2015
By: Carol Muse Evans

You may have seen the YouTube clip of 5-year-old Rilee Thurber of Alabaster who has Achondroplasia, a form of dwarfism. Her mom Angela posted the video in recognition of Dwarfism Awareness Month last October. It took off – so much so that they created a Facebook page for Rilee. Rilee even made the news.

 

With the popularity of such television shows as “The Little Couple,” “Seven Little Johnsons” and “Little People, Big World,” the fascination with little people continues, and perhaps some of the stigmas are being debunked. Yet it continues to be an uphill battle for many little people, both socially and physically.

 

Dwarfism is a condition of short stature. It is defined by the advocacy group Little People of America (LPA) as “an adult height of 4 feet 10 inches or under, as a result of a medical or genetic condition.”

 

“There are two main categories of dwarfism – disproportionate and proportionate,” says Maria Descartes, MD., professor of genetics and pediatrics in the Department of Genetics at UAB.  “Causes of proportionate dwarfism include metabolic and hormonal disorders such as growth hormone deficiency.

 

“Disproportionate dwarfism is characterized by an average-sized torso and shorter arms and legs, or a shortened trunk with longer limbs.  In proportionate dwarfism, the body parts are in proportion, but shortened,” Descartes explains. “The most common types of dwarfism, known as skeletal dysplasias, are genetic and therefore hereditary.  …but dwarfism can be caused by any of more than 250 conditions.”

 

Rilee has Achondroplasia, the most common form of dwarfism, according to Angela. “The family in Little People Big World” had this kind of dwarfism,” she explains. There is no known history of dwarfism in Angela or Tim Thurber’s backgrounds, and Achondroplasia is caused by a genetic mutation, Descartes says.

 

Kristen and Brian Peterson of Sterrett’s son, Russell, has the same form of dwarfism as Rilee. The couple heads the local Birmingham/Alabama chapter of the Little People of America support group. Unlike The Thurbers, who found out in utero that Rilee had dwarfism, Kristen says they didn’t find out about Russell’s condition until he was 10 days old. Both sets of parents are average height. “It was a little scary, facing the unknown,” Kristen recalls.

 

“Two average height parents (no history of dwarfism) have a small change for having a child with a dominant form of dwarfism (about 0.004 percent),” Descartes explains. Though Rilee’s condition was a result of a genetic mutation, she will be able to pass it on to her children, Angela says.

 

Not necessarily considered a “special needs” category, the medical issues faced by many with dwarfism create a special needs category. “Those with Achondroplasia can have respiratory problems, spinal decompression and a large head…it may mean surgeries throughout their lives because of some of these issues,” Angela says. “Organs can be compressed, children like Rilee can get congested easily, and she’s had a lot respiratory issues. These children are known to have lower immune systems and some even have to be on oxygen while sleeping.”

 

Descartes adds, “Many short-statured people could be considered disabled as a result of conditions, mainly orthopedic, related to their type of dwarfism. In addition, access issues and problems exist even for healthy short-statured people. Consider, for example, the simple fact that most achondroplastic adults cannot reach an ATM. Dwarfism is a recognized condition under the Americans with Disabilities Act.”

 

From the video, you can tell Rilee takes a lot in stride, and since starting kindergarten in Alabaster this school year, she’s done great, Angela says. “They have modified a lot of things for her – there are stools everywhere,” Angela says. 

As for questions and social issues, possible stares and unkindnesses, Angela says Rilee is young and really hasn’t noticed anything yet. “There was an incident a few days ago where two little boys told her she was a baby and too small to play,” Angela explains. “This was eye-opening for Rilee, that kids were bigger than she was, but we had always told her she was special and this was how God made her, and that was how she responded.”

 

In public most people are nice, Angela says, but you do get the stares. Some people may say she’s cute, precious, or a “precious baby.”  “I really don’t mind the questions,” Angela says, “and I would rather them ask than stare.”

 

Because of her video, Rilee has become something of a celebrity, and along with her Facebook page, it has opened the door for better understanding of her condition, Angela says.  People will come up to her because they “know her,” and it’s turned into a positive, Angela adds.

 

The Thurber family of four, Mom, Dad, Tim, big brother Jacob and Rilee also are part of the local chapter of Little People of America that gives Rilee interaction with other little people.  Rilee also enjoys some of the television shows with little people, Angela adds. And her form of dwarfism is the same as Bill’s on The Little Couple. While surgeries may be in her future, she should live a normal life, her mom adds.

 

The local support group includes anyone with dwarfism, along with family members. Kristen says they most recent meeting had approximately 11 families represented. She and husband Brian have tried to revive the once inactive group, and it began in December 2014.

 

“Research shows that little people who are part of a support group have a better outlook on life,” Kristen says. “We are excited to get the local chapter active and going.”

 

Carol Muse Evans is publisher and editor of Birmingham Parent, and new Rilee fan.

 

 

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