ONCE UPON A GENE - EPISODE 007 - A Little Love
I'm talking to my friend Mckenzie Vander Hoek about her daughter Everly. We met at Kindering, our local birth to three center where our kids were in preschool together. Everly is a bright 2 1/2 year old who has been affected by a form of dwarfism. McKenzie is here to share Everly's story with us.
EPISODE HIGHLIGHTS
Tell us about Everly.
Everly is our super spirited, very joyful little girl who is very social. She also has a form of dwarfism called Achondroplasia. She was diagnosed when she was 7 weeks old and it's been a wonderful journey with her so far. She teaches us so much. We entered a world we didn't know we were going to be a part of and now it's pretty cool to be a part of something so rare, unique and that can teach the world about differences.
Can you tell us about Achondroplasia?
There are over 200 different types of dwarfism and Everly has the most common form, Achondroplasia. Eighty percent of people born with dwarfism are born with Everly's type, and generally to average height parents like my husband and I. The average height for someone with Everly's condition is about 4 feet.
What happened at 7 weeks old where you were approached with the diagnosis?
We had a perfectly healthy pregnancy throughout. I only had two ultrasounds because there were no suspicions or concerns. My last ultrasound was at 20 weeks and it showed no concerns. Three days after her due date, we welcomed her into the world and she was perfectly healthy as far we were concerned and doctors thought she looked great. She did have a heart murmur and she spent one night in the NICU for that. That's unrelated to her condition. We were at her 7 week follow up for the heart murmur, everything looked good and the heart murmur was gone. Once I got home from that appointment, the same doctor we saw had left a voicemail saying that she had concerns she wanted to talk about with us. Of course, my heart dropped to my feet and I called her back immediately. The doctor said that after we left she was thinking about how Everly looked, that despite my husband and I being very tall, that Everly was very short and that her stats had dropped from 50th percentile to 7th percentile since her birth date. Her head size stats went from 50th percentile to over 100th percentile in that time, so her head was growing very fast and her limbs weren't. She brought up dwarfism, I looked at Everly in my lap and I just saw it. I was in new parent bliss and didn't think about there being any issues. It was a complete shock.
Have you met any local friends that share Everly's stature?
We are part of the Little People of America Association (LPA) and there are usually gathering they do each year all over the world. When Everly turned 6 months old, there was one in Tacoma and we got to attend that and meet so many amazing people. At that point, Everly was the only baby there and we didn't meet anyone her age then, but since then we have found a lot of other families with kids about her age. As rare as dwarfism is, you don't often see people walking down the street that are little people. My husband and I had just recently bought a house and moved to a different area and we were at our new grocery store where we saw a little person. He was the manager of the store we were at. We walked straight up to him with Everly and introduced ourselves. It was really special to us to see other people just like Everly in our own community. We can't wait for more of those opportunities for Everly. As her parents, as much as we wish we could understand what she's going through, we don't.
I want to address the m-word. Can you educate us on why we shouldn't use that term?
The m-word (midget) is a word we do not tolerate in our household and we want the rest of the word to know it's not tolerated. It was used in the 19th century as a term to refer to little people put on display for humor or circus acts. It became an okay word to use, but nowadays is considered to be very derogatory, much similar to the r-word or n-word. So many people don't know it's offensive, so I'm here to educate on that. It's very hurtful to people who are of short stature.
What are some practical things in your household setting that you're doing to accommodate Everly?
She just started walking in May, so we haven't had to have any adaptive things in the house yet. We did just get a stepstool for her from a friend. She has been using it non-stop and it has given her so much more independence. She's so proud when she walks up those steps and she has the biggest grin on her face. We also had a desk handed down to us that's a little smaller than the average desk and just the right height for her, so she can sit at it and draw and use it for years. Other than that, we haven't needed anything else at this age.
With this type of dwarfism affect her mobility, fine or gross motor skills?
Her fine motor skills have been right on track. She didn't crawl until she was 1 because her limbs were shorter and it was hard for her to get up on her hands and knees. She didn't walk until she was 28 months. As I've read, the expectation of kids with Achondroplasia walking is anywhere from 15 to 30 months. Her gross motor skills are a little more delayed in that sense.
What has changed for you as a mom after have Everly?
The biggest thing for me has been learning acceptance and that no matter what someone looks like, it doesn't matter. We're all people who want to be loved, treated equally and accepted for who we are. I struggled with body image issues growing up and I think I'll always struggle with that a little bit, but Everly has transformed my view on that. She looks different than the average person walking down the street and she's still just as beautiful to me and her personality still shines just as bright, if not brighter.
LINKS AND RESOURCES MENTIONED
Everly’s Story - Dear friends and family letter
Little People of America Association
Evie + Lolo on Instagram - @evieandlolo
TUNE INTO THE ONCE UPON A GENE PODCAST
CONNECT WITH EFFIE PARKS