Wednesday, October 7, 2009

Dwarfism Awareness month

I wanted to write a little about dwarfism and what it means this month in honor of my beautiful daughter Kaela Rachel Laurin. Kaela has taught us and her family so much about dwarfism and accepting the differences in people. We can only hope that people will read our blog and learn something new and walk away with a new understanding and a little knowledge. The more we make you aware, the more our children have a chance at leading a life with less stares and more acceptance.
DWARFISM
People who are born with dwarfism are people. They enjoy doing the same sorts of things as people who are of average height.
People with dwarfism are small in size, but can do just about anything that an averaged sized person can do. They may do it in a different way, but odds are, they can do it too.
People who are born with dwarfism want to be treated like everyone else. They deserve to be treated like anyone else. This does not make them any less of a person.
The majority of little people are born to average height parents. Most forms of dwarfism are caused by a random mutation.
People who are born with dwarfism can hold jobs, have families, play sports and so much more.
Someone with dwarfism can be referred to as a little person, lp, dwarf, person with dwarfism, and most importantly by their name. The word midget is considered to be very offensive and should not be used.
There are over 200 forms of dwarfism.
Dwarfism does not cause cognitive impairment. Most children born with dwarfism, have average or above average intelligence.
Kaela's specific form of dwarfism is called Metatropic Dysplasia. There are around 85 known cases of MD around the world, meaning it is a very rare form of dwarfism.
The average height for someone with dwarfism is typically around 4 feet, but can range from 2 and a half feet to 4 feet 10 inches. Kaela will most likely be between 3.5 and 4ft tall.
The most important thing you can know is that people with dwarfism are people. This world is full of all kinds of different people, and once you begin to learn a little about 'different' you will realize there's nothing wrong with it. The more educated we become, the better off we will be. Being curious, having questions and wanting to learn is natural and accepted. Asking appropriate questions is okay. Being rude and making fun of someone is not okay. If you have questions or want to learn more, ask. I have met a lot of parents of little people in the last couple of years and I am sure that every one of them would love to brag about their kids to you! The more we know, the more accepting we are. Learn a little and pass it on.
WHO could resist this face?!

10 comments:

Alex said...

wonderful post!

Rachliedel said...

That was great Sarah! And I don't know who could resist my little Kaela :-)

Melissa Swartley said...

Great awareness post! Kaela's smile is just so sweet and she is irresistable! Love the pictures of her! Beautiful!

Mandy said...

That was a great post! Kaela is so sweet. I love her smile.

Greene Family said...

Great awareness post! Kaela is so adorable! I love her beautiful smile!

Kim said...

I cannot resist that little face! She is just getting prettier and prettier everyday. This is a great awareness post. I never knew MD was so rare. Kaela is truly one of a kind!

Lisa said...

I can't believe I hadn't commented on this one yet. Excellent post. Glad you did this!

Winfred said...

Here is some additional information about the "genetics" of this condition that was written by our Genetic Counselor and other genetic professionals: http://www.accessdna.com/condition/Skeletal_Dysplasia/415.

I hope it helps. Thanks, AccessDNA

Kristen said...

hi, My name is Kristen , my 3 yr old son was diagnosed hypochondroplasia,skeletal displasia also. I too started a blog tbo hear from others who share my experience orhave info I do not. My email is randomkcv@yahoo.com or hypochondroplasiakid@blogspot.com

Nichole P said...

First off thank you for sharing and opening up the public to your daughter's condition and her amazing spirit. I too, have Metatrophic Dysplasia Dwarfism and am the only one in my family with any type of dwarfism. Growing up with this specific type of dwarfism has it's struggles and unfortunately, several medical issues, however, I feel blessed to have been born with this type in this day and age, where medical science has thrived. When I was first diagnosed specifically, it wasn't until I was 3 in 1985, in which, you're right, it is a rare type of dwarfism (there were only 5 others diagnosed with it then when my parents found out). Next month I turn 30 and though, we were originally told i probably wouldn't live past 16, thanks to medical advancements, I'm here today. Your daughter has so much life and yet, I can somewhat understand some of her pain she will go through in her life, I know she is definitely strong and will persevere, no questions asked.
Dwarfism is hard enough without counting all the other medical debacles that come with this type. I hope you guys have an awesome and trusting orthopedic surgeon, who will really help her quality of life as she gets older. I still have mine since 1989 and just had him do my final knee replacement surgery (both hips & knees replaced) and I've never felt more in my prime then I do now. I will Kaela the very very best and just thank you, a caring mother, who is supportive and resourceful. It's mothers like you and mine that make the quality of life for those with medical issues easier because of the support & awareness. Again, thank you for sharing. I don't mean to tell my life story exactly in a comment, but since I'm going on 30, I figured I share a little bit of good news too, that miracles can happen and family love & respect help build the foundations to our success with our own disabilities. Keep up the postings! :D