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October 25th #DwarfismAwareness Day

10/24/2018

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Tomorrow is a big day for a little person in my life. 
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This is Rupert. He is 2 years old. He loves music. Loves to dance. Loves to build things. Loves to read and be read to. He is discovering that he likes to sing. He is a new big brother, and despite not liking the idea of having a brother, he has discovered that being the older sibling is pretty neat. He likes to be helpful, especially if it involves earning stickers!

Rupert had a rough start in life. He spent the first 3 months of his life in hospital. Why? Because he was born just a little bit different than other babies. 

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Rupert has dwarfism, one of the 200+ forms of dwarfism, a genetic mutation skeletal dysplasia that resulted in some of his parts growing in different proportions than other parts of his body. In his case, he ended up with smaller sized chest and rib cage but average sized organs; this made it difficult for Rupert's heart and lungs to expand properly. He also ended up with a smaller sized jaw and an average sized tongue, and so he wasn't able to grow a palate to close the gap between his mouth and his nose. 

If you were meet Rupert today, you probably wouldn't be able to guess any of that. Rupert is a happy, healthy toddler, eager to learn and play. He's just small. Most people don't realize that he has dwarfism, until he gets grouped together with children his own age. As he gets older, this difference will get more pronounced. It's hard to predict exactly how tall Rupert will grow or how fast, but it is assumed that his full adult height will be between 3 and 3.6 feet. Looking at his growth chart now, his new-born baby brother is already catching-up to Rupert. By the time the newest edition is 2 year old, I predict that he will surpass his (then) kindergarten-aged brother in height. 

Despite no longer having any medical complications, Rupert will still have to face a society that isn't built for him, and, even scarier for me as a parent, a society that doesn't understand that he is just a normal kid. 
​I don't like to go into too much detail about my children on this blog, but I will make an exception today. You see tomorrow, October 25th, is Dwarfism Awareness Day. I can't change the world for my little boy, but I can try to change the ignorance of one person, and for all I know, that could make all the difference! 

​If you've read this much, you are already contributing to Dwarfism Awareness Day. There is nothing you have to do. There is nothing to you need to give money to. There is nothing you have to subscribe or run a marathon for. You have participated simply by acknowledging that dwarfism is more common than you might think, and that, really, aside from being a bit smaller, these people are no different than you are. Sometimes there are medical complications, but average height people often use medical support too. 
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If you want to know more, it is an easy thing to research, and many countries have their own Little People Association groups. Did you know that there is also a global sports competition for Little People? It really is like a mini Olympics, it rotates around to different host countries/cities, and people from all over the world come out to participate and spectate. In fact, a number of dwarf athletes go on to compete in the Paralympics. 
​

​World Dwarf Games

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If you would like to stand in solidarity with Little People tomorrow, wear green, you could even sport one of this very fashionable green ribbons. I make them for our friends and family, so don't feel like you have to rush an online order; it's just ribbon on a safety pin. 

Some Facts About Dwarfism:
​(from https://dwarfismawarenessaustralia.com)

Did you know that there is over 200 different types of dwarfism?

You cannot catch dwarfism. It cannot be passed onto someone else like a flu. It is a hereditary and non hereditary condition which can only be passed on through carriers of the mutated gene or developed spontaneously in utero by a genetic mutation of a gene.

Dwarfism refers to a group of conditions characterised by shorter than normal skeletal growth. This shortness can be manifested in the arms and legs or trunk.
Achondroplasia is the most common type of short-limb dwarfism, occurring in around one in 25,000 children in Australia with both sexes at equal risk. This type of skeletal dysplasia (abnormal skeletal growth) is usually diagnosed at birth.

The majority of children born with the disorder have average-sized parents. The child may experience delay developing motor skills, such as controlling the movements of the head, but intellectual development is normal in children with Achondroplasia. The average final height for a person with this condition is 130cm for men and 125cm for women. Short-statured people lead normal, fulfilled lives. Achieving higher levels of education and career and personal ambitions is not limited by stature.

In humans, dwarfism is sometimes defined as an adult height of less than 4 feet 10 inches (58 in; 147 cm). Dwarfism can be caused from over 200 distinct medical conditions, such that the symptoms and characteristics of individuals with dwarfism vary greatly. Disproportionate dwarfism is characterized by one or more body parts being relatively large or small in comparison to those of an average-sized adult, with growth variations in specific areas being apparent. In cases of proportionate dwarfism, the body appears normally proportioned, but is unusually small.

There is no single treatment for dwarfism. Individual differences, such as bone growth disorders, sometimes can be treated through surgery, some hormone disorders can be treated through medication, and by hormone replacement therapy; this treatment must be done before the child’s growth plates fuse. Individual accommodations, such as specialized furniture, are often used by people with dwarfism.

For people, in addition to the medical aspect of the condition, there are social and sociological aspects as well. For a person with dwarfism, heightism can lead to ridicule in childhood and discrimination in adulthood.

Hypotonia, or low muscle tone, is common in dwarfs, but intelligence and lifespan are usually normal. Defining dwarfism by height alone is problematic because short stature in itself is not a disorder. For example, pygmies have adult male heights of less than 150 cm (4 feet 11 inches) on average.

The word “midget” is considered offensive. It is considered most offensive when misused to describe those with dwarfism. Acceptable words to use are dwarf, little person, person with dwarfism, short stature. But most would like to be called by their name rather than their condition.
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    Ashley Newell, stupendous noveling sensation whom you've probably never heard of...
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