Meet Wendy! You can always find her spending time with her German Shepard, playing in the water, or listening to music! Wendy is the only child in the world with a specific chromosomal abnormality, but that doesn't stop her from being the happy and loving child she is. Today, I conducted an interview with Wendy's mother and we talked about Wendy's diagnosis, her day to day life, and more.
1. To start off, can you tell me a little bit about your child (her name, age, more about her condition, etc)?
Wendy is an almost 9 year old girl with a one of a kind chromosome abnormality. Her birthday is Oct 8, 2011 and she was born with an unbalanced chromosome translocation between 7p22 & 10p15. As far as we know, she’s the only child in the world with that exact anomaly, so the abnormality/condition doesn’t have a name, but she does have a few other diagnoses such as autism and microcephaly.
2. What are some major challenges with having the condition your daughter has?
Our biggest challenge has been dealing with a one of a kind disability. I know all children (and disabilities) have their own ways of being unique, but with Wendy, there are no specialists that can give us any clue as to what her future will or should look like. With some chromosome abnormalities- like Down Syndrome- there are specific growth charts and information about what the child’s life could possibly look like, but in our case, we usually know more than the doctor does because they’ve never seen this before.
3. What is your daughter’s day to day life like and how has it been impacted by your child’s diagnosis (for example, therapy, medicine, etc)?
Right now, Wendy’s day to day consists of medication, working on potty training, and homeschooling. Wendy was completely tube fed from birth, but is now eating orally, so since we’ve accomplished the goal of her no longer needing the g-tube, we are now working on getting her potty trained.
4. Are there any medical treatments your child follows?
Wendy is treated for many things, like reflux, allergies, and being hyperactive, but our biggest thing right now is trying to fix her immune system. Her IgM count (a type of immunoglobulin) is practically non-existent, which means she’s missing her first defense to fight infections. This means she’s more prone to catching illnesses and being unable to fight them off, which is why we homeschool. She also doesn’t have any immunity to vaccines that she has previously had. We are now working with an immunologist to do treatments every 4-6 weeks (with lab work between) to see if we can build her an immune system.
5. Has your child’s diagnosis affected the way she learns?
Wendy is quite delayed developmentally. We’re not sure if that’s due to her chromosome abnormality, the autism, or her microcephaly. The microcephaly means her brain isn’t the size it should be and that could definitely affect her learning, but it could be from any of those or a combination. She’s also nonverbal, but is slowly learning to speak more words. We’ve been using simple sign language since she was a year old to help her communicate.
6. If you or your child could tell the world one thing, what would it be?
She’s the happiest child I’ve ever met. Most people see the struggles I write about and assume Wendy’s/we have had a hard or unpleasant life. (I actually started a blog when I was pregnant because we knew about her disability before birth and I was hospitalized for 5 weeks after my water broke until I gave birth, so writing was a way to update everyone all at once and pass the time; the blog eventually ended and I began using Facebook.) Our life isn’t “easy”, but we wouldn’t change Wendy and we believe our struggles have molded us into the family that we are and Wendy is an insanely happy, loving child.
7. What would surprise people the most about your child?
I would say other than the fact that she’s got a one of a kind chromosome abnormality (that’s usually surprising to people- finding out she’s the only one in the world like her), her age usually surprises people. Wendy is quite small, but she is not diagnosed with any type of dwarfism. At a year old, she was barely 12lbs wearing 0-3 month size clothing. Now at nearly 9 years old, she’s maybe 35lbs and wearing clothes typical to that of a 4 year old.
8. What does your child like to do for fun/hobbies?
Listening to music is by far one of her favorite things to do! Wen also enjoys playing with her German Shepherd, playing house (pretending to cook, do laundry, play with baby dolls), and she loves the water- whether it’s in the bath, pool, lake, whatever!
9. What is the most important thing for someone to understand about your child’s condition?
To me, the most important thing is for people to realize she’s a human being. She has thoughts and feelings, just like everyone else, even though she may express herself differently.
10. Has your child’s diagnosis affected your job?
Absolutely. I have a degree in veterinary technology, but decided to be a stay at home mom when we had Wendy. Thankfully, at the time of her birth, I wasn’t working; I was pursuing another degree (bachelor’s in business) because my husband/Wendy’s dad was serving in the Army, so it was an easy decision to continue to stay home to be her full time caregiver. We ended up moving back to our hometown when Wen was about 6-7 months old because her dad didn’t want to re-enlist after she was born; their unit did year long deployments every other year and he didn’t want to miss such long periods away from her (especially since we weren’t given an expected lifespan since her condition is one of a kind) and he also didn’t want to leave me alone to deal with her medical issues on my own.
11. Are there any resources which you recommend if people want to learn more about your daughter’s condition?
My original blog is still up and I post a lot on her Facebook page. Those are things I’ve written and shared, but also Autism Speaks teaches quite a bit about autism and Chromosome Disorder Outreach and Global Genes are important resources when it comes to rare/one of a kind disorders.
My Blog- alwayskissmegnight.blogspot.com
Wendy’s Facebook- Facebook.com/BabyWendysJourney