Today I was talking to Andy Fenberg, the head of our video department (this is the only photo I could find of him).
We were trying to describe what Chive Charities does at its very core, and where it fits in the charitable makeup of America, in the blueprint.
We kept coming back to how we address the urgency of it all, how quickly we can deploy resources and help.
Andy observed, “It’s like these recipients’ families are holding up this wall, and another wall starts to fall on them, so now they’re holding that one up, too. Then the third wall starts to collapse and there’s nobody there to stop it. And that’s when the Chivers show up. Chive Charities is like that, only we don’t just fix the structure, we stick around to paint the walls some crazy color. ”
And then we met Grace. Here, she’s a perfectly healthy 5-year-old who loves soccer and surfing. One day, she fell down inexplicably during a soccer match, and two days later she fell again…and again. Grace said there was an “invisible monster” attacking her legs. The doctors were baffled.
Suddenly, her parents Zack and Heather were holding up a wall.
Finally, Grace was diagnosed with Friedriech’s Ataxia. The prognosis is grim – it begins with losing coordination in her arms and legs, graduates into hearing loss and slurred speech, aggressive scoliosis, diabetes. It’s highly likely a heart arrhythmia or congestive heart failure will take her life, and no doctor in the world can guess within 5 years either way when that will happen.
The second wall begins to collapse around the family.
Time went by and Grace continued growing, and her mom struggled lifting Grace into the small family sedan just to get her to her doctor appointments.
And the third wall starts to fall. But this time, there were many hands to catch it.
Chive Charities surprised Grace with a brand new BraunAbility van. It not only gets her safely to the doctor, but to her favorite kind of therapy, adaptive surfing.
With the walls reinforced, the painting begins. Grace told me it was her dream to go to Duke’s OceanFest in Waikiki to meet other adaptive surfers just like her. She called them her “tribe. ”
“I’ve seen videos of other kids who surf like me, I want to share my surfing tips with them. ”
So, after the Chivers donated $49,000 for the wheelchair-accessible van, we set a goal of $10,000 to get Grace to Duke’s OceanFest this year. In classic Chive fashion, you raised $23,000 so the whole family could go.
Last week, Grace touched down in Hawaii to live her dream. She even led the opening ceremony.
Meeting the other adaptive surfers…
Grace and her tribe.
Grace hits the sandy beaches for the first time.
Grace’s surfing instructor John Afshari made the trip from Cali. Aside from being a general badass, he’s been teaching adaptive surfing in Oceanside for years with Stoke for Life.
(John’s Instagram)
Grace paddles out!
What a moment, all of this made possible by Chivers’ generosity.
The look on Grace’s face after the first day is priceless.
Grace’s sister Ray giving her own look.
Local Chive firefighters asked to meet the little surfer girl.
The next day, John and Grace hit the surf again.
Then something incredible happened…
Grace’s mom said, “During a break in the waves, a sea turtle swam right up to them and played for a while. Grace learned about aumakua (guardian spirits) here at the Disney hotel and is now convinced that the honu (green sea turtle) is her guardian. So that made the sea turtle experience even more magical for her. ”
The turtle gravitated to Grace and played with her for a while before saying goodbye.
Only 6 months ago, Grace’s checkup didn’t end well. The best advice her cardiologist could give was, “Try and keep her active and positive. If (Grace) falls into a funk, her health will continue to decline. ”
And today, a small miracle: lab results came back showing zero signs of failure, lactic acid is the lowest it’s ever been, and her heart is beating like a champ.
At the end of a long day surfing the gentle waves of Waikiki beach, Grace and her sister take a long, peaceful nap before dinner with her tribe.
(Fingers crossed) It looks like Grace is going to make it to the Green Gala in Austin this year! It was our monthly donors who purchased Grace’s BraunAbility van, and now she wants to “personally thank every Green Fund Member who came to her aid when she needed it the most. ” I’ve always said our recipients will give back more to us than we ever give them. Grace is no exception.
By becoming a Bronze, Silver, Gold or Green level Chive Charities donor, yours are the first hands to hit the wall, to push back against the darkness that closes in around so many families who badly need our help. I hope our members, and everybody who donated to this campaign, read this and smile. You did this.
