Emberlyn H.

Princess who lost her legs has her Disney wish granted

October 5, 2016

Emberlyn was born with Type 4 Caudal Regression Syndrome, the most severe of its kind. Because her spine ends early (or what doctors say “at T-12”), she has no hipbones, no tailbone, and no pelvic bones. Emberlyn was born with legs, but they weren’t connected to anything at all.

Over time, Emberlyn’s legs became a health hazard. Emberlyn’s mother, Joanie, had met older children with Type 4 CRS, whose legs dragged behind them, causing infections or sores, presenting obstacles to their independence and mobility. Amputation surgery was quickly becoming her only option.

Because prosthetics must have a fulcrum, a hinge, something to connect to… it was determined immediately that prosthetics were not an option for Emberlyn. This wasn’t going to be easy.

This is a photo taken hours after Emberlyn’s surgery. Joanie said, “She just wanted to sleep and sleep. I refused to leave her side. Every now and then Emberlyn would wake up and look me in the eye. She was exhausted but not scared. She was determined.”

Six months later, Emberlyn’s older sister, Ellyna, was celebrating her third birthday. She wanted to have lunch at the McDonald’s Playland in their hometown of Lincoln, Nebraska.

Other kids bullied Emberlyn that day. Two boys were pointing and making fun of her, when Ellyna stepped in front of them and said, “That’s my sister.” Ellyna is her sister’s ever-present guardian. The boys continued to point, when Ellyna took a step toward them and stared them down. The boys cowered and ran away.

That night, Ellyna had a princess-themed birthday party. The girls love all the Disney princesses, from Cinderella to Elsa. But Emberlyn’s favorite character is Mickey.

Ellyna decided they should both wear Minnie outfits so her little sister would be happy after a rough afternoon.

Before Ellyna blew out her candles she said, “I wish my sister could see Disney World.” The moment was touching, but it broke Joanie’s heart.

“When I heard my daughter say that, I was so proud of how selfless a three-year-old could be but I never felt more helpless. I knew we couldn’t afford a trip to Disney,” said the single mother of two. “In fact, we had never been on vacation. The only time we left Lincoln was to bring Emberlyn to the hospital in Omaha. I hate to say this but we call those trips ‘vacation’ so Emberlyn would feel better.”

Behind the scenes, Chive Charities was hard at work on an idea. We knew the need – an ADA-accessible van to get them back and forth from Lincoln to the hospital in Omaha. Before we can dream, we must address the reality. So Chive Charities’ Green, Gold, and Silvermembers made a $53,000 grant to purchase the Hemmer family a 2016 wheelchair-accessible Dodge Caravan.

These are the uncelebrated sacrifices that our Chive Charities members make every week. They allow us to clear the runway for something amazing to happen.

It would cost $10,000 to get the family from Nebraska to Disney World so Emberlyn could meet her heroes. But the Chivers thought one night was a silly thing.

As one Chiver commented: “One day at Disney isn’t enough. They have weeklong all-inclusive package too. Maybe we should get Emberlyn that instead of this stupid $10,000 goal John just limped in with. I’ve been saving up to bring my family (to Disney World). But I’m donating all of it to Emberlyn. We can go next year. They’ll understand someday. Let’s go.”

Chive Nation rode in like knights in shining armor. Led by the Central Florida Chivers (Making a strong case for Bona Fide status) we raised $33,000 for Emberlyn and her family to go to Disney World for a whole week!

Welcome Emberlyn to the Magic Kingdom!

The Central Florida Chivers even showed up with presents for Emberlyn!

The CFC told me via email, “I saw this little girl with blue eyes and a precious smile, and I instantly knew it was Emberlyn. The moment Joanie set her down she was off, she’s that independent. We were captivated by Emberlyn’s energy. Her confidence and strength is inspiring.”

Emberlyn loves Rapunzel so her mom told her to go find a shopping cart…

And that’s about the cutest thing you’ll ever see.

The nice people at Disney World found out about Emberyln’s arrival and arranged for her very own Princess Breakfast!

From Snow White to Cinderella, even Elsa! Every princess showed up to meet Emberlyn. Thank you, Disney World!

Joanie told me, “I have never seen Emberlyn so happy. Words will never be able to express the gratitude I feel for the Chive community. Just when I thought I didn’t know how we were going to make it, you showed up. It sounds corny but it was the closest thing to magic I’ve ever witnessed. “

And finally, Emberlyn met Mickey Mouse. Priceless.

Don’t worry, Mickey surprised them the next day at Disney World.

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