Dwarfism Awareness- Ashlyn’s Story | Kingwood Moms

Dwarfism Awareness- by Summer Singleton (Ashlyn’s Mom)

On March 19, 2011, our sweet Ashlyn was born. Ashlyn weighed 7lbs. 8oz. and measured 19 inches. At the time, we had no idea God had blessed us with a very special little girl.

At Ashlyn’s first appointment with her pediatrician, her limbs were measuring on the small side and her head and torso measured over the 97th percentile compared to other babies her age. Ashlyn had several tests to out rule water in the brain, broken bones, thyroid issues, etc. When all these tests came back negative, our pediatrician referred us to a genetics specialist at Texas Children’s Hospital. As soon as the doctor walked into the room, she knew Ashlyn had a form of dwarfism. She showed us a book and compared Ashlyn’s trident “starfish” hands to the ones in the book. At that moment, we were shocked and overwhelmed yet thrilled that we finally had a diagnosis. Some genetics testing was done to determine Ashlyn had Achondroplasia, the most common form of dwarfism.
Throughout the years, Ashlyn has had three surgeries to put tubes in her ears due to her constant ear infections. She had her tonsils and adenoids removed to help with her snoring, She’s had four sleep studies to monitor her sleep apnea and is now using a cpap machine to help her sleep. She received physical therapy between the age of 1-2 to help her meet her milestones, and eventually begin walking. She has been taking speech since the age of three. These are just a few of the things that those with dwarfism have to go through. We have been extremely blessed that Ashlyn has not needed spinal decompression or leg straightening thus far as many with dwarfism need at some point in their life. We visit her specialist at Texas Children’s once a year for a physical checkup, measurements, and x-rays if necessary.

Ashlyn is now nine years old. She enjoys going to school, playing with her friends, participating in karate, Girl Scouts, and drum line. We attend our LPA (Little People of America non-profit organization) District 8 (Texas & Louisiana) fall and spring conferences along with holiday activities. This allows Ashlyn and others with dwarfism to interact with one another in hopes of them becoming life long friends. As parents, we have learned a great deal from our LPA District 8 leaders and friends. We use the knowledge shared with us to spread awareness within Ashlyn’s school, on social media, or even when we’re out in public. We plan on attending the National LPA Conference in Austin this spring. This conference will include families from all over the country. Ashlyn is looking forward to it!

Please go to www.lpaonline.org for further information about dwarfism.

“LPA is a non-profit organization that is dedicated to improving the equality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity. LPA strives to bring solutions and global awareness to the prominent issues affecting individuals of short stature and their families.”

October is dwarfism awareness month, so here are some fun facts that you may or may not know about dwarfism and the LPA.

-Billy Barty was a well-known actor as well as an activist for the promotion of rights for others with dwarfism. He founded the Little People of America (LPA) organization in 1957. We celebrate National Dwarfism Awareness Day on October 25th because that was the day Billy was born. We wear green because that was supposedly his favorite color.

-There are over 400 different forms of dwarfism.

-80% of little people have average-height parents and siblings.

-The term “midget” is a derogatory word. Most people with dwarfism prefer the term “little person” or their NAME.

-Dwarfism is not a reason to believe someone is incapable. Little people can do just about everything as an average sized person; they just might do it in their own way.

-People with dwarfism are not generally taller than 4’10” as an adult. The typical height is between 2’8” to 4’5”.

-A common misconception about people with dwarfism is that they are cognitively delayed or mentally impaired. This is NOT true.

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