TinySuperheroes Delivery!

Last night I accompanied Super Rory and Super Maria on an important TinySuperheroes Mission. You never know when you will be called on for an important Mission, and when you do, bedtime goes out the window and you answer the call!

St. Louis Children’s Hospital is home to Dr. Parks who is known all around the world for performing SDR surgeries. SDR stands for Selective dorsal rhizotomy and is an optional surgery for kids with Spastic Cerebral Palsy. Parents from all over the world make the hard decision to travel to St. Louis for the surgery, followed by weeks of intensive physical therapy. All in all the surgery is a month commitment with many more months of therapy to follow up with when they return home. On average, it seems families need to raise about $150,000 to move ahead with the surgery. It’s a big deal.

Through a series of awesome coincidences, we were informed of a group of kids who were in town for surgery and camping out at the same hotel…of course they needed capes!

Tuesday night Super Rory, Super Maria, her mom and I met at TSHQ to gather our supplies and headed to their hotel!

There isn’t a word to describe the experience of empowering kids with their official cape. It changes your life. Soon I’m going to figure out a way for a videographer to accompany me on deliveries…

There we met Super Ella, Super Ben, Super Emma and Super Jana. They all have spastic cerebral palsy and each had the SDR surgery in May, but these four TinySuperheroes are each so unique that I can’t wait to tell you about them individually.

Super Ella is 5 years old from New Zealand. She actually had her SDR surgery ON her fifth birthday – May 3!!!  Super Ella is a celebrity in her neck of the woods. I could go on and on about this girls incredible journey, but for starters,  she is a world record holder – the first I’ve ever met actually. Super Ella loves fairies and in their efforts to fundraise for SDR, they broke the world record by having 928 fairies in one place! They rallied their community in such an amazing way that men, women, dogs and kids were all dressed like Ella to help get her to St. Louis! There’s so much more to this amazing kid, you should definitely follow them on Facebook at Fairy Steps 4 Ella.

Super Ben is 6 years old and is also from New Zealand. It took about 30 seconds to learn that he was a rockstar. He certainly has the personality for the part, but it was amazing to experience one of his concerts in the lobby of the hotel. He and all of these friends had drum sticks that they found at the Hard Rock Cafe and it was clear we weren’t their first audience! It is Ben’s dream to walk unassisted, and the path to that dream involved getting to St. Louis for SDR surgery. His family made it happen and his resilience and determination will have him on his own two feet, I am sure. He’s also a superstar in New Zealand, so be sure to check his story out here.

Super Emma is 7 years old from Denmark. She has a grace about her that you can feel when you are with her. Super Emma could walk independently before SDR, but they were very hopeful the surgery would help. After surgery, most kids have to work very hard to regain muscle strength before they see improvement. When we found them, Ella, Ben and Emma were having celebratory “walking cookies” because we met her on the day she walked independently again for the first time. What an honor. They will be returning to Denmark this weekend where her dad, twin brother and older sister can’t wait to have her home! Super Emma’s cape had a heart on it, and she told her mom (because I unfortunately did not speak her language) that her super power was knowing how people were feeling and being able to make them feel better. I have no doubt this is true of her.

And finally Super Jana. She and her mom are in town from Jordan and she had her surgery just about a week ago. I am SO happy that they happened to return to the hotel while we were still here, because missing them would have been a big loss for me. The first thing you notice about Jana is her smile. It is BEAMING. I don’t think I’ve ever seen a more radiant smile. Jana is 8 years old. She is a bit shy but her loving nature overpowers it. She held my hand during a photo and half of my heart is still in a puddle in that hotel lobby. Jana just had her surgery about a week ago, so Tuesday was her first day of the intensive therapy. In order to make the trip for her SDR, Super Jana created beautiful artwork to help fundraise. She is an incredible artist. When I saw her pictures, I couldn’t believe how beautiful they were. I am going to do a separate post about her art because I learned so much from her three drawings. You can follow her journey on Facebook at Hope for Jana.

We’re grateful to have been greeted by open arms, and so humbled that our community’s love resonates across the globe.

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