Mother brings awareness to dwarfism through social media
Any Facebook user knows that scrolling down one’s newsfeed is a lot similar to visiting a yard sale – as in, you never know what you are going to find.
Some friends will post funny video that make you laugh, while others request needed prayers for their loved ones or use social media to inform you about changes in their job, relationship and political views, as well as day-to-day happenings.
Donna Russell uses her Facebook page to bring awareness to dwarfism.
Russell logs into her account almost daily and shares facts about what dwarfism actually is. One post recognized that October is Dwarfism Awareness month.
The information read: “Dwarfism is not an intellectual disability. Dwarfism is not a reason to assume that someone is incapable. Little people can do just about anything an average sized person can, just sometimes in a different way.”
The post went on to explain that terms such as little people, person of short stature, person with a form of dwarfism and dwarf are considered acceptable; yet, “Most people would rather be referred to by their name than by a label.”
Donna, a registered nurse at the Plastic Surgery Center of Nashville, and her husband, Paul, a professor at Vanderbilt University Medical Center, never expected to have such a passion for raising awareness for dwarfism. However, that all changed on April 7, 2010 when they welcomed their daughter, Ruthie.
Although Donna and Paul have no history of dwarfism on either side of their families, they learned on the day that Ruthie was born that she had achondroplasia – a type of dwarfism. “Although there are over 300 types of dwarfism, achondroplasia is the most common type making up 70 percent of all little people,” she explained. “Eighty percent of people with achondroplasia have average size parents, meaning it is a sporadic mutation. The chance of two average-sized parents having a child with achondroplasia is 1 in 25,000 births.”
The word achondroplasia means “without cartilage formation.” Cartilage is a tough but flexible tissue that makes up much of the skeleton during early development. In achondroplasia, the problem is not in forming cartilage but in converting it to bone in a process known as ossification.
All people with achondroplasia have short stature. The height of an adult male with achondroplasia is 131 centimeters or 4 feet, 4 inches and the height of an adult female with achondroplasia is 124 centimeters or 4 feet, 1 inch. Characteristic features of achondroplasia include an average-size trunk, short arms and legs, limited range of motion at the elbows and an enlarged head with a prominent forehead.
After Ruthie’s birth, the Russells were welcomed by the local chapter of Little People of America and continue to meet periodically with the group.
“(The group) was a wealth of knowledge for a mom trying to absorb any information she could get her hands on,” Donna told The Wilson Post. “It is a very fun group, to say the least. The last event we attended was in Chattanooga, where we visited the Chattanooga Choo Choo and the Chattanooga Aquarium.”
The Russells also journeyed to see the Egyptian pyramids, where they learned an interesting piece of history. In ancient Egypt, little people were very respected and held great status in the community.
“We even saw impressive tombs carved for them. It was fascinating,” Donna shared.
Donna said that the most important information she can share during Dwarfism Awareness month is that her daughter is just like any other child.
“It was a long and painful – at times – journey to this discovery. Ruthie is my little firecracker, my rock and truly my inspiration,” she said. “I have another chance in life to appreciate true happiness, love and acceptance of every precious person who walks this earth. Although we do receive stares – sometimes just those of curiosity, which we don’t mind, and sometimes the kind that follow with unwelcome comments – the world is kind.”
“I hope if anyone reading this article happens to meet an LP, they will not look away like they are invisible or gawk. I hope they will kindly say ‘Hi’ like they would to any other person,” she said. “I am so proud to be Ruthie’s mom. She has taught me so much more in these few years than I will ever be able to teach her.”
For more information, visit www.understandingdwarfism.com.