October is “awareness month” for many important things: breast cancer, liver cancer, Down syndrome, pregnancy and infant loss, and domestic violence are just a few that I know about. But I want to talk about a cause that has affected our family personally in the past year: dwarfism (also known as skeletal dysplasia). This collection of conditions seems like a rare thing, but it affects 1 in 5,000 pregnancies and children, a number that adds up quickly among the more than 300,000,000 people who live in the United States alone.
Last January, I lost an unborn granddaughter to an incredibly rare and (in this case) fatal form of dwarfism called Ellis-van Creveld Syndrome. My daughter-in-law Erin wrote about this in August. In a striking coincidence, Ellis-van Creveld is seen mostly among the Amish, though it occurs sporadically throughout the world. None of the families on either side of this child has any Amish ancestors, and we know this because the genetic makeup, although named the same—Ellis-van Creveld Syndrome—is different from that of Amish with the same condition. My daughter-in-law and I have felt compelled to honor this coincidence by doing what we can to raise awareness to this and similar conditions and to bring support to those who have experienced this issue in any form.
Erin and her close childhood friend Andrea, who by another surprising coincidence has a baby with achondroplasia (the most common form of dwarfism), wanted to share some facts about dwarfism, along with some dos and don’ts on how to address people who are affected. Afterward I will write about how the Amish help those in their communities who have disabilities.
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Here’s Erin:
This is me (Erin) beside my good friend Andrea and her sweet baby boy named Griffin. I’m holding Iris’s ultrasound pictures and footprints.
Griffin is seven months old, and like most children his age, he enjoys cuddling with his mama, tasting new foods, and watching his two big sisters play. However, he has a few medical concerns that his parents need to manage because he was born with achondroplasia.
Like 80 percent of people with dwarfism, Griffin’s parents and siblings are average height, and he has no family history of this condition. People with dwarfism reach an adult height of between 2’8″ and 4’10”. Although the condition impacts bone growth, they are not cognitively affected.
There are more than two hundred types of skeletal dysplasias, with more still being discovered. About half of these types are fatal prenatally or immediately after birth, which is what I experienced when I lost my baby. The majority of people with skeletal dysplasia are affected by achondroplasia. This condition occurs in all ethnicities and equally among male and female babies. The good news is that it has a very good prognosis: the majority of people with achondroplasia have a normal lifespan and only deal with a few issues when they are young regarding head size and joint mobility.
Like any mother, Andrea is worried about the challenges that Griffin may face. But she is much more concerned with how the sometimes cruel world will treat him as he grows up.
I’ve always liked the phrase “know better, do better.” Many times a person will say something with no ill intent, but the words are still hurtful. In July 2009 the word midget was declared by Little People of America to be inappropriate and offensive, and they registered a complaint with the FCC over the use of this word. Accepted terms are having dwarfism, short stature, little person (or LP), and the medical terminology use of dwarf. A person’s name is always the most preferred, just as you would address anyone else.
Please share this information with at least one person this October. And wear green on October 25 to show support for Dwarfism Awareness.
I wish sweet Griffin could have grown up with my daughter Iris as a close friend and fellow little person so that they could face together the many challenges of growing up in a world built for people of average height. But I can still honor her memory.
Last August, many of Cindy’s readers responded in the comments on this site about the babies they lost—some recently and some years ago. I hold all of you in my heart and continue to pray for you as we go through this lifelong grief journey together.
I look forward to the day when we will all be reunited in heaven!
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Thank you, Erin, for sharing your heart with my readers.
Here’s how the Amish help those in their midst who have special needs and medical concerns.
The Amish are very community-minded. If a barn needs to be built, neighbors will work together to complete the construction in one day. All who can are expected to cooperate, and everyone is confident that the favor will be returned if necessary. Their views on medical needs and concerns are similar.
In 1965 the Amish opted out of Social Security, Medicaid, and other government assistance for religious reasons. And they don’t have health insurance from a corporation insurer, but most participate in a community co-op health plan. Often each family contributes to their community’s hospital aid fund, and a portion of large bills are paid by free-will offerings.
The Amish believe that every child is a blessing. It seems that for many decades they have been more progressive than the rest of American society when it comes to accepting children for who they are and talking openly about a child’s special needs. I know of a few Amish families who have begun a small business in order to give their special needs adult children fulfilling, successful jobs.
For more information, here is an article that I found interesting.
Giveaway
For this special post, I’d like to give away a copy of all three novels of The Amish of Summer Grove series, including book three, which will be released in August 2017. I will also give away a green t-shirt with a Dwarfism Awareness decal.
For a chance to win a copy of The Ties that Bind, Fraying at the Edge, and Gathering the Threads and have book three arrive a few days (or weeks) before its release, just leave a comment on this blog. If you’re a first-time commenter, please read the “Helpful Tips” section below.
Only comments made on my website will count as entries. So if you’re reading this blog anywhere other than on my website and you’d like to enter the giveaway, please hop over to my site and leave a comment there.
The deadline for entering this giveaway is Tuesday, October 25, at noon Eastern Time. Three winners will be chosen using Random.org and will be contacted directly. All of my giveaways are limited to US residents only. Please visit my giveaway rules and FAQ page for a complete explanation of the terms and conditions of this giveaway.
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