Dwarfism Awareness Month!

When we first learned that Sonya would be born a little person I was surprisingly at peace with that fact. I knew very little about dwarfism at the time, but I knew she would be ok being little. My only concerns for her were purely medical. We were told that she had one of two lethal types of dwarfism. Lethal because she would have respiratory issues once born. All I could think about was "Please God let her be able to breathe and live!" I knew that there would be struggles when it came to her stature, but that she could overcome those struggles and live a happy life. I just prayed that she would get to live that life! To read more about our begining click on Sonya's Story.

I can't tell you how many times I have had strangers, who have just learned her age, tell me "Oh wow! She is really tiny! Was she premature?" After my response of "No, she is a little person." they look at me like I have two heads, like they are thinking "isn't that what I just said?" It amazes me how many people do not recognize the term "little person"! I literally have to spell it out for them. "A type of dwarfism." Even still, most people just don't get it. This of course most often ensues in a 30 to 45 minute conversation about how many types of dwarfism there are, as most people who have heard of dwarfism are only familiar with Achondroplasia, and of course the lengthy discussion of Sonya's particular type of dwarfism, Osteogenesis Imperfecta type 3.

Most people with the many different types of dwarfism would not consider their type of dwarfism as a disability. For Sonya it is different. "Frequent fractures of the long bones, the tension of muscle on soft bone, and the disruption of the growth plates lead to bowing and progressive malformation." is stated by the Osteogenesis Imperfecta Foundation. These frequent fractures hinder her ability to be as mobile as a person who is of average stature and unaffected by OI. Sonya doesn't let any of this "hindering" get in her way! She is a very determined little girl and nothing will stop her from achieving great feats! She dragged around a 5 pound half body cast at just 17 months of age (her stats : 17 pounds and 27 inches at that time) moving from room to room with a broken femur for 7 weeks! She found a new way of getting around after she broke her arm at 14 months of age and could no longer bear pressure on it to crawl! Sonya amazes us and others with her strength as she pulls up to stand on her 90 degree angulated weak and brittle femurs (thigh bones) and again when she hoists her small 27 inch frame up on top of our couch that is almost as tall as her at 20 inches. She is strong despite her fragile bones and small body. It may take her longer than the average height toddler to accomplish things such as walking and running but she'll get there when she's ready! She is one amazing sweet girl and we are blessed to have her as our daughter!

Aside from OI and dwarfism being a very small part of who Sonya is, she is a typical almost 2 year old! Sonya loves hamming it up for the camera, giving a little bit of an attitude here and there, telling us "NO!", playing dress up and tea party. She loves building with her blocks, naming the pictures on her flash cards, looking at her books and playing with her baby dolls. Her appetite is small like her and she is generally a picky eater as are most toddlers. She could watch Elmo all day if I let her and she finds it amusing when the cat meows loudly after she pulls his tail. She enjoys taking rides around the block in her Step 2 Car Buggy and her Radio Flyer Wagon when she is in a cast. She is terrified of the lawn mower and the vacuum and immediately wants to be held and comforted when either are running. Sonya is completely all out obsessed with Beyonce's Single Ladies hit song and requests frequent plays of the video on YouTube. One of these days I will have to catch her on video dancing and singing to it! She hates being contained, in the highchair, car seat, stroller, or by a gate just like any other toddler usually does and will do anything in her power (usually screaming at the top of her lungs and throwing a full out tantrum) to be freed! Surprisingly she is just awesome at going to bed for me! She almost always, with only a few rare exceptions, falls asleep within only 5 minutes after I put her to bed!

Sonya makes my heart skip a beat every time she says "I ya you" (I love you) and she has me laughing in stitches when she says "Jus poopie!" (Just poopie!) referring to whats in her diaper at any given moment. She gives warm squeezey hugs and slobbery kisses and you can bet if you are with her for just 10 minutes you will see her pick her nose at least once! She will pout when you tell her to stop. Sonya loves to get her hands on my phone, my keys and everything else that she can't have that lives inside my purse. She can be silly and quirky at times but she is always just super cute, sweet and lovable!

As you have read, Sonya is your typical almost 2 year old. Being a little person whose bones are fragile and break easily is just a small part of who Sonya is. Although her type of dwarfism, OI, is a serious condition and it does affect her daily, she doesn't let it own her or run her life. When it comes to Sonya life, she is the star and she runs the show!

Sonya with her two older sisters Zoe and Akela last October (2008)

Sonya this October (2009) wearing the same exact outfit, same size!

Sonya pulling up to stand October 2009

Sonya with her Daddy's size 10 1/2 work shoe October 2009

Ok, so now I'll take a moment to express my feelings about the "M" word. It is flat out unacceptable and offensive. Many people compare it to the "N" word that is used with hate and ignorance to describe African Americans. Both of these terms should be eliminated from our language! I also think of it this way : using the "M" word to ridicule someone of short stature is just as terrible as it would be to point and laugh at people with other genetic conditions. Is it acceptable to poke fun at someone with Alzheimer's Disease, Autism, Cerebral Palsy, Diabetes, Downs Syndrome, Epilepsy, Hemophilia, Muscular Dystrophy, Parkinson's Disease or Spina Bifida....etc... The answer is NO! So why do people think that it is acceptable to ridicule, point and laugh or whisper about people with a type of dwarfism? It's a genetic condition! It comes down to this : We are ALL human! We all come in different shapes and sizes, colors and personalities. Isn't this something that is taught to us all when we are in preschool or kindergarten?! Shouldn't it have sunk in by now?! Ok, I'm off my soap box.

Now I pass on this message from Little People Of America. Here's to spreading dwarfism awareness!

FOR IMMEDIATE RELEASE CONTACT:
October 1, 2009 Gary Arnold
Little People of America
1-714-368-3689
GArnold@accessliving.org
LITTLE PEOPLE OF AMERICA RECOGNIZES OCTOBER AS
NATIONAL DWARFISM AWARENESS MONTH

October has been declared National Dwarfism Awareness Month by Little People of America. Little People of America (LPA) is a national support organization for people with dwarfism and their families. LPA provides peer, parent and medical support for the dwarfism community.

LPA began in 1957 with actor Billy Barty and 20 short-statured friends. The first LPA meeting was monumental for a group of people who were severely mislabeled and misunderstood by society. Today, Little People of America is a thriving international organization providing much needed support, education, educational scholarships, and community outreach.

In declaring Dwarfism Awareness Month, LPA hopes to raise positive awareness around dwarfism, address common misconceptions, and increase opportunities for people with dwarfism around the country.

“People with dwarfism are no different than any other person. We may just need a well-placed stool. Our members are children, college students, business professionals, doctors, engineers, mechanics, artists and teachers. We can do anything an average-height person can do,” says Lois Lamb, LPA President and a person with dwarfism.

“Raising a child with dwarfism is new for most parents. Being part of LPA has made a tremendous difference. My daughter and I both have great friends and role models. High school is not an easy time for most teens, but neither of us feels alone in dealing with any extra challenges,” says Joanna Campbell, average-height mother of a teen with dwarfism.

More about LPA and dwarfism:

* There are over 200 distinct forms of dwarfism and skeletal dysplasias.

* People with dwarfism are generally not taller than 4′ 10″ at adult height. The typical height range is 2′8″ to 4′5″.

* Eighty percent of people with dwarfism have average-height parents and siblings.

* There are an estimated 30,000 people in the United States and 651,000 internationally with a type of dwarfism.

* In July 2009 the word “midget” was declared inappropriate and offensive. Preferable terms are: having dwarfism, short stature, little person, lp, and the medical terminology use of dwarf. A person’s name is always the most preferred.

* LPA has registered a complaint with the FCC over the use of the “m” word. Our goal is to raise awareness around the offensive impact of the word in order to eliminate use of it in media, popular culture and in everyday language.

* LPA has 6500 members across the United States and includes 70 chapters active in all 50 states.

* Skeletal Dysplasias affect bone growth, but generally do not affect cognitive abilities.

* LPA hosts an annual national conference each July which draws 2500 attendees for a week of activities, including educational and medical workshops, sports, and social networking and events.

For more information about National Dwarfism Awareness Month, please visit www.lpaonline.org or call 1-888-LPA-2001. Events supporting National Dwarfism Awareness Month will be occurring throughout the United States all during the month. Contact the chapter in your area, or the Regional Coordinator for Dwarfism Awareness Month listed on the website.

The National Dwarfism Awareness Month program is dedicated to increasing public knowledge about people with dwarfism.

Mission of LPA “LPA is dedicated to improving the quality 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.”

The LPA National Office is located in Southern California. You may also contact Joanna Campbell, Executive Director at info@lpaonline.org or (714)368-3689.