October is Dwarfism Awareness Month

“I think he has a form of Dwarfism.”

This was the moment it all started getting blurry for me. During our follow up ultrasound, at 20 weeks pregnant, our doctor said these words to us.

Shock, confusion, curiosity and denial flooded waves over us.

I wondered how anyone could tell with such certainty that this little baby, not even growing for 5 months yet…. would be born… and live so differently… from his brother and sisters?

It seemed like a pretty bold statement to me…. but with semi-reliable screening, it was a viable claim to make, based on the measurements and shape of his long bones.

I also wondered who this little boy was…. what was he doing and thinking in there…. he came in so strongly, with a plan and a purpose…. my purpose was to bring another baby into this world, into our family…. another soul working together to make our space a better place…

…. what in the world are you thinking, little man?

What an agenda you’ve got if we are already getting surprises told to us from the outside….

…. I thought our big plans were just between the two of us…

… I thought we were co-creating on this certain level and it was going to be smooth and semi-predictable.

I didn’t realize you were already getting everyone else involved.

Thus began our continued journey of learning, trust and conviction.

OI is a form of Dwarfism

Slow bone growth can cause short stature in those with OI.

Our son has already shown us that with his mighty appetite and slow growth compared to other babies who don’t have OI.

Although he is healthy and proportional, he will continue on his own growth curve.

This has been a huge obstacle to overcome from a mindset perspective.

Babies are “supposed” to grow a certain way, within a certain time.

After working with a nutritionist for the past year, we are comfortable knowing Niko will continue to grow at his own pace, as well as love nutritious food, God willing.

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5 Facts About Dwarfism

• There are over 200 distinct types. The most common type is achondroplasia.
• Over 80% of people with dwarfism have average height parents, siblings and children.
• The term “midget” is a derogatory slur. In some circles, a midget is the term used for a proportionate dwarf. However, the term has fallen into disfavor and is considered offensive by most people of short stature. The term dates back to 1865, the height of the “freak show” era, and was generally applied only to short-statured persons who were displayed for public amusement, which is why it is considered so unacceptable today. Such terms as dwarf, little person, LP, and person of short stature are all acceptable, but most people would rather be referred to by their name than by a label.
• People with dwarfism are not generally taller than 4″ 10′ as an adult.
• A common misconception about people with dwarfism is that they were cognitively delayed or mentally impaired. This is NOT true.

For more information, www.lpaonline.org

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This experience has changed us and our perspective, as anyone would imagine.

According to rarediseaseday.us and the National Institutes of Health, there are over 7,000 rare diseases** affecting 25 to 30 million Americans, which is nearly 1 in 10.

My eyes have been opened to the many differences we have. I feel very lucky to be living at this time, where compassion has never been greater, inclusivity has a growing awareness and we are more connected to communities and resources than ever before.

Abnormal may be a medical term that allows for comparison, control and a limited amount of understanding…. but in our lives, there is nothing abnormal about the beautiful souls who don’t fit into a box but rather invite us into theirs.

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The OI Foundation

I’m happy to announce that I have joined the local group already established for individuals and families with OI, as a Support Group Leader.

 I am eager to create a greater OI presence in our area, cultivating our medical, research and technology communities to take an interest in OI. I’d like to offer a sense of community for our OI families, education, support for care and a passionate point of reference for all of our families. I’d like to gain a cohesive message in our area that generates interest and a passion for innovation and up-to-date care.

If you are or know any medical or research professionals who may be interested in discussing bone and muscle health as it relates to OI, as well as treatments, care, holistic initiatives, genetic and epigentic advancements, please contact me or forward this along!

Join Me!

 

 

**Osteogenesis Imperfecta is considered a genetic disorder, or condition, rather than a disease, according to the OI Foundation at http://www.oif.org