I have watched 'a miracle,' says mom of daughter born with deadly disease

Editor's note: Sarah Turnbull first told this story on stage at the Des Moines Storytellers Project "Everyday Miracles" event. The next event is "Busted" on April 5. An edited version of her story appears below. 

March 28, 2007. At 11:56 a.m., our second child entered the world. In my arms lay the most beautiful baby girl, with a full head of dark hair and bright beautiful eyes. 

"Stella!" I said. "Her name is Stella."

I could see the pride in my husband's eyes. Yep, he was smitten with our baby girl. 

In walked Stella's older brother. He was loving on her and kissing her feet, and in those first moments of Stella's life, everything was rainbows and unicorns. Perfect in every way.

The nurse came and said: "Wow, you have a million dollar family." That's apparently the notion you have a perfect family if you have one boy and one girl.

Yes, it was perfect. Then there was a knock on the door.

Moments later everything that was normal would become a new journey, a new chapter in our lives.

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She was diagnosed with one condition and then another and then another. Each one seemingly more complex than the previous one. And then we were blindsided. 

She'd become a floppy baby so we were referred to a neurologist. As we sat in that room, rocking our baby girl, the neurologist looked at us for along time, probably trying to figure out what she was going to say.

Then she said, as slowly and gently as possible: "Your child has SMA. Spinal Muscular Atrophy." 

Words we had never heard before. She told us not to google it, but knowing we would, she cut to the chase.

SMA is the leading genetic killer of children. It is the child form of ALS, Lou Gehrig's disease. And she most likely wouldn't see her first birthday.

In Stella's case, she was the most severe this doctor had ever diagnosed. She gave us weeks or months.

"What? She didn't look terribly sick. How could this be. She's got to be wrong!" My mind screamed, but for the first time in my life I couldn't say a word.

She went on to tell us about the disease, that it was progressive, but her brain would remain unaffected. She smiled the most empathetic smile.

"Take her home and love her. There's nothing we could do." 

How were we supposed to take home our child and let her go?

We so desperately wanted hope, but there was none to give. 

***

When Stella was 5, I asked her kindergarten teacher: "Does she have friends?"

Her kindergarten teacher laughed and said: "Are you kidding me? She's the most popular kid in kindergarten."

At the end of the year, she wrote me a letter about how much Stella had impacted her classroom without ever having spoken a word.

She talked about 20-plus different incidences in which Stella would be dressed up by other kids, or they would move her arms and legs to songs because she couldn't dance herself.

At the end she wrote: "Other students saw you as Stella, just another kindergartner. They didn't see the things you couldn't do, just the things you could.

"I am so blessed to have you in my classroom and so grateful to have been your teacher."

I had no idea the impact my child was making on others. 

A couple years later, I was asked to speak at a parent's information night. I was mainly there to talk to parents about my daughter's condition, in case their children came home asking questions about her feeding tube or ventilator. 

I was telling them how it would be great if they could leave their kids at home if they were sick, because a small illness for their child could mean a hospitalization for mine.

I felt like I was burdening them with information. At the end, I asked if there were any questions. One mother said:

"Thank you, so much, for sending Stella to school. Because of your child, my child is learning to be caring, helpful and more accepting of others.

"Because of Stella, I hope that all of our kids will become better people." Other parents nodded and smiled. 

I'm not sure why it shocked me, but it did.

***

Sept. 21, 2016. It's one of those days that impacts your life so much that you remember everything about the day: What you wore, who was there, every last particular. 

Stella had just had a surgery and she was recovering at home. 

She suddenly became unresponsive. Her ventilator was no longer supporting her, so we were bagging breaths into her tiny little chest. And calling 9-1-1.

I can't adequately tell you what it's like to be a mother and see your child's helicopter beeline across the sky — and you can't get there fast enough.

As we arrived at the hospital, lots of tests and procedures had been done. It was confirmed that Stella had surgery complications from the week prior. 

Test after test came back, each one showing us that Stella's body was failing.

One last test came in, the doctor glanced at it and then looked at us and said:

"There's nothing we can do. You probably have about 20 minutes left with her." 

I glanced at every doctor in that room, looking for any glimpse of hope that perhaps what he was saying was wrong. But once again, I didn't get any.

Our pastor stood behind us. We had seen the numbers. She was in kidney, liver and heart failure. And as he stood behind us, squeezing our shoulders, he asked the most difficult question we've ever been asked in our lives.

"Are you ready to let her go?" 

Through tears I found myself saying, "The one thing I've asked for in on this entire journey is that I would not loose her in a crisis."

There was silence. Then a peace washed over me. An indescribable peace.

I smiled at my beautiful girl, and as I held her hand, I told her how proud I was of her for not ever giving up. I closed my eyes and held her hand.

Suddenly I felt her fingers moving. Not believing what I was feeling, I looked up and sure enough she was also opening her eyes. 

I looked at her monitors and her body was improving.

The nurse who had been pushing fluids into my daughter's veins for hours and hours smiled and said: 

"That my friends is a miracle. We didn't do that."

***

Today, Stella is almost 11 years old. 

She is currently receiving the first-ever, FDA-approved treatment for her disease. 

We don't know what our future holds, but what I can tell you is that I have had the privileged of watching a miracle right before my eyes.

A child change the lives of everyone she meets: Doctors, students, teachers, parents, everyday human beings.

Without ever having spoken one word. 

About the storyteller: Sarah Turnbull is originally from southeast Iowa and graduated from Central College in Pella. After college, she worked in the insurance industry in Des Moines before falling in love with a Dutch boy and returning to Pella, where she lives with her husband, three children, and runs her photography studio. 

Storytellers show

THE NEXT EVENT: "Busted: Stories of how I got caught" will feature two shows April 5 at the Temple Theater. Register journalist Courtney Crowder is hosting; coaches include journalists Kyle Munson, Rekha Basu, Mackenzie Ryan and Linh Ta.

HOW TO ATTEND: Tickets are going fast and previous events have sold out. General admission tickets are $10 and VIP tickets, which include a free drink, are $25. Buy them at DesMoinesRegister.com/Storytellers. Anyone needing assistance can contact events@dmreg.com or call 515-619-6548.

The 2018 storytelling season

THIS YEAR: Tickets for the entire season are on sale at DesMoinesRegister.com/Storytellers. Subscribers can earn a discount on tickets by using their Insider credentials to unlock a special promo code at checkout. Anyone needing assistance can contact events@dmreg.com or call 515-619-6548.

• Busted: Stories of when I got caught. April 5 at the Temple Theater, Des Moines. Shows at 5:30 p.m. (sold out) and 8:30 p.m.
• Blended: Cultures mixing, changing and thriving in Iowa. June 7 at Curate, Des Moines. Shows at 5:30 p.m. and 8:30 p.m.
• Rural Life: Celebrating our roots and small-town squads. July 12 at the River Center, Des Moines. Shows at 5:30 p.m. and 8:30 p.m.
• Siblings: Love, rivalry and lasting ties. Sept. 20 at Forte, Des Moines. Shows at 5:30 p.m. and 8:30 p.m.
• War Stories: Battles on the frontline and back home. Dec. 6 at the Tea Room, Des Moines. Shows at 5:30 p.m. and 8:30 p.m.

TELLING A STORY: We believe that everyone has a story worth telling, and everyone can tell a story. Register journalists coach storytellers for each of our events. Read our guidelines and submit a story online under "speak." Please note that the stage is not guaranteed.

STORYTELLERS STORE: Embrace local storytelling with our new notebooks, mugs and apparel, available online in different colors. Order at ShopDMRegister.com/Storytellers.

Catch the stories

Missed the event?  You can still enjoy stories from "Everyday Miracles: Blind luck, spiritual moments and awakenings."  

TELEVISION: Medicom rebroadcasts stories from the most recent show on MC22 periodically; check local listings for times

PODCAST: Listen to the Des Moines Storytelllers podcast, which is available on iTunes and Stitcher

ONLINE: Videos from this and other Storytellers events can be found at DesMoinesRegister.com/Storytellers under "Watch & Listen."