Our 22q-ts are Worth every Moment and every Penny

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https://www.change.org/p/abc-state-the-accurate-facts-about-22q11-2-deletion-syndrome
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Dear Shonda Rhimes,

First let me begin by congratulating you on owning that huge corner of Prime Time. That’s epic. You’ve blazed trails and turned heads and earned a devoted fan base. But you know that of course.

I’m going to tell you what you might not know. Let’s start with me. Hi, I’ve been a loyal viewer for the most part ever since the premier of the first episode of Grey’s. I was hooked on the characters and the crazy smart writing. Even when our views on important matters veered in opposite directions, I always came back because once you’ve won my mind with your witty quirky banter, you’ve won my heart. I’ve seen every episode.

So I know that back in 2013, when Mer was anxious about whether her baby would emerge a freak of nature, andshe wondered aloud if he’d have Digeorge Syndrome, Karev soothed her hysterical mind with a stat about Digeorge Syndrome’s rarity.

“There’s like, what, 1 in 100,000?”

I don’t know if you know Digeorge parents but actually there’s a lot of us out there.That’s because Digeorge actually occurs at about 1 in 4,000.And the thing about us Digeorge parents is that, even though the syndrome is estimated to be the second most common genetic syndrome (second to Down’s), the truth is we’re fighting a hard battle most of the time, and we’re too tired to rally and fight a quick blip of inaccuracy on Grey’s. We wished you’d got it right, but you didn’t, so we went back to tube feeding, giving meds, researching medical interventions and otherwise being busy moms and dads living our day to day lives.
What Karev said, “There’s like, what, 1 in 100,000?”
What Karev should have said, “Mer, we’re doctors. Even if something was wrong with your baby, there’s no knowing what your child would be like because syndromes vary so much. Digeorge is a treatable condition. Hell, your BFF is the most fierce heart geniusto ever hit the scalpel.”

While we’re at this, there was Private Practice, the Grey’s spin-off. Like Grey’s it deals with medical anomalies but through the eyes of Addy, the OB / neonatal superstar.Sometime around the end of season 2,Digeorge pops up again.
When counseling a pregnant mother, Ralph alludes that half of the parents in her position keep the baby and the others… he trails off.“She says, oh god no, end the pregnancy? You’re telling me to abort.” Addison reassures her no one is telling her what to do.

What should have been said?

Addy: “Digeorge is a treatable syndrome. This is an amazing age where heart defects can be repaired and drugs can be administered and therapies and interventions can give your child a normal life.”

You see, my daughter is 6. She’s in a typical Kindergarten. She has Digeorge / 22q Deletion Syndrome, and has 4 heart surgeries and two repairs related to her cleft palate. She was tube fed until age 3. Her speech is funny and she attends OT and Speech weekly.
But you know what–watch her for 5 minutes at the playground of her school. She’s amazing on the monkey bars. She has secret handshakes that lasts several minutes with her BFF and her smile will light up a room. She’s zany and loves to pull practical jokes, and she’s brave. She’s really, really brave. Every 6 months she gets an EKG and Echo where we hear, not another open heart surgery needed yet.

This week, the 22q community, has tried to launch a media attack just big enough to catch your attention. Grey’spulled another (likely unintentional) lame attack against the syndrome we know too well. Geena Davis is a badass, and I get the show’s characters and writing. I do.

But I know that when your character says, “Two stillborns and this one has 22q Deletion… she should have just adopted.”

Some people are up in arms about the fact that it sounds like she’s saying that Digeorge / 22q kids aren’t going to thrive. And they’re pissed because our kids are FIGHTERS. Like no others. We sit next to them in NICUs and Cardiac units and watch so many IVs pump who knows how many meds into our babies, and yes many 22q babies don’t make it. But many thrive and you left that fact out.

I am more upset about the adopted portion of her statement.

No motherwould think her child should have been replaced by another healthy child. To me you’re saying, she won’t be worth the fight. She’s not worth this pain. I guarantee my child is worth it and so much more.

Shonda Rhimes and Grey’s writers, it’s been many years of crazy conditionsand plot twists. Why have you not given us a solid heart mom? A feisty, goofy, adorable 22q / Digeorge kid? I’m guessing you’ve never known one. Get to know us. We need the recognition, because like I said, we’re too tired to continually fight for attention in the media’s eye–but the public, new moms and dads–they NEED to know their 22q kids are worth the fight. That there can be spectacular times mixed with the impossibly hard years.

Give us a strong 22q parent and child team. Give us someone to follow through ups and downs, victories and setbacks. Digeorge /22q Deletion Syndrome is a rollercoaster syndrome. It’s hard but it’s life. Show me you think my child is worth it.

by Jeni Wilmot
"https://jeniwilmot.wordpress.com/2015/02/07/dear-shonda-rhimes-why-is-my-child-not-worth-it/"