Record storms rolled through Lincoln that morning. Joanie recalled, “A woman in her 90’s was being rescued from her basement down the road. I’d never seen so much water.” Flash floods lapped the top of the grille on the family’s Mitsubishi Galant as she made her way to the highway, “Both my aunts’ homes flooded. We finally made our way out of the city for the hour drive to the hospital in Omaha. I thought my car would hydroplane off the road at any moment but we made it.”
That was one year ago today.
Emberlyn was born with Type 4 Caudal Regression Syndrome, the most severe. Because her spine ends at T-12, she has no hipbones, no tailbone, no pelvic bones. She has no feeling below the end of her spine, nor is she able to control her bladder or bowels. Because prosthetics must have a fulcrum, a hinge, something to connect to… it was immediately determined that prosthetics were not an option for her. And her legs, bent, bowed inwards, and painful – would never be useful, they were more or less fleshy sacks attached by skin.
Emberlyn’s legs were actually a health hazard. Joanie had met other 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.
A kiss from her big sister, Ellyna, days before her surgery.
The anesthesiologist walked in the room. Uncharacteristically, she started to cry. “I’m sorry, this story really touches me. We’re going to make sure your baby is ok.” Two nurses entered to assist the prep and began crying as well. There is something about seeing a child like Emberlyn, crystal blue eyes, smiling. It can’t help but break your heart, knowing what was about to happen.
Surgery ended around noon. Emberlyn was exhausted. She only wanted to sleep, and sleep. When she woke up two days later. Her legs were blistered and swollen. Her mother, Joanie (pictured) has worked as an ER registrar for 5 years. She knew the road ahead would be difficult: Immediate Acute Hospital Postoperative Stage followed by post-operative recovery of lower extremities is 12-18 months. A long, stormy road lay in front of them. Joanie, a single mother of two, would brave it alone.
Emberlyn somehow understood what happened. After healing, mobility would be key.
A modified Bumbo seat helped the toddler get around at first.
Also, this might be the cutest darn thing I’ve ever seen.
Emberlyn, or Emmy, as she’s called by her family, has compensated for her missing limbs. She has incredible upper-body strength and loves to show off by climbing flights of stairs or doing hand stands and little flips. Because of her sister Ellyna’s help, she can navigate her wheelchair to get herself around. But most importantly, Emberlyn has courage, a constant source of joyful positivity that comes from within, that she might never have discovered if she weren’t challenged every day of her life. That’s what makes her a champion: The fact that she doesn’t believe she’s the underdog.
But the family still needed a lot of help.
That’s where Chive Charities stepped up.
For Emberlyn, transportation is not a luxury, it’s a necessity. Without it, she cannot travel comfortably or safely on her many road trips to Omaha for surgeries and appointments. She deserves to travel in a vehicle that is customized to fit her needs, soChive Charities responded with a $53,000 grant that purchased a 2016 wheelchair-accessible Dodge Caravan. A huge thank you to the folks from BraunAbility and Heartland Mobility for their help.
The bond between Emberlyn and her older sister, Ellyna, is a sibling bond stronger than most. The two were born only 16 months apart. Emberlyn wants to do everything that Ellyna does. Ellyna likes to jump on the couch at home. Emberlyn would watch, wanting so badly to play too. Then one day, Emberlyn reached for one of the cushions and flipped herself up on the couch and started bouncing, proud of her new accomplishment.
Ellyna is very protective of her sister, her tiny guardian. “On Ellyna’s 3rd birthday we were at McDonald’s Playland for lunch and some kids where making fun of Emberlyn. Ellyna stepped in front of them and calmly raised her finger, ‘That’s my sister.’ She stared the bullies down as they cowered away.”
Later that day, Ellyna had a princess-themed birthday. The girls are obsessed with Disney World. Ellyna loves Princess Elsa and Emberlyn is a Mickey Mouse Club girl.
“Every time a Disney World commercial airs, the sisters gather around the TV and Emberlyn exclaims, ‘Mickey!’ even if Mickey isn’t in the commercial. The two dream of Disney World.”
We asked Ellyna to make a wish and she wished for her sister to see Mickey. It was beautiful to hear a 3-year-old make such a selfless request but heartbreaking at the same time knowing I couldn’t grant Ellyna her wish.”
Joanie said a 'vacation' is a foreign idea to her family. "We get creative," she said. "Every few months, we travel to Omaha for Emberlyan’s treatments. Across the street from the children’s hospital is Westroads Mall. We go to the food court and toy stores, the girls call it vacation. Westroads Mall is the only vacation the girls have ever known.”
Last night, on the anniversary of her surgery, I called Joanie to see how everything was going. I like to call recipients the night before a flash campaign launches to make sure they’re ready. We all have our small rituals. Thunderstorms were moving though Lincoln again. “The rain is so bad they even closed the Wal-Mart. I had a couple free hours so I tried to go volunteer at my ER’s sister facility but I had to turn back.”
When it rains, Emberlyn often sleeps in her mother’s arms, maybe a lasting memory of a long night a year ago.
“John, I know what it is you do. But we don’t need much, just some happy time as a family. That would mean the world to us. There are so many days when I can’t imagine something good will ever happen again. But we have to keep going, keep believing.”
“We’re going to do everything we can.”
“Thank you. Emberlyn is finally asleep now. I hope the rain is over.”
So we have an idea and I’m sure you know where I’m going with this...
“All our dreams can come true, if we have the courage to pursue them.”
– Walt Disney
After so much suffering it’s time to give the Hemmer family the vacation of their lives. The good people at Disney just learned of the family’s possible arrival and will make sure Mickey and Elsa greet the family at the front gates if we get them there.
The goal is set at $10,000 for all you knights in shining armor to come to the rescue for this courageous and deserving little princess. Anything raised past the goal will fund a wheelchair-accessible ramp for the family home. Emberlyn has struggled so mightily but continues to overcome all obstacles. Mother Joanie has the day off and they are watching the campaign go live as we speak with the local news station in Lincoln. Let’s show this family how Chive Charities grants a wish, shall we?
Donate RIGHT HERE!
A special thank you to the Chive Fund members for your support. At Chive Charities, we always lead by example and these campaigns begin with you. Become a Green Member and help make the world 10% happier today.