EB is short for Epidermolysis Bullosa, a connective tissue disorder that causes fragile skin that blisters easily, causing widespread wounds. Any friction, no matter how small would cause the skin to blister and shear off. It is a life-limiting condition.
This is Cole with his bat suit on.
The following two images are extremely graphic. You all need to see them to fully comprehend what we’re dealing with here before we mobilize.
This is Cole with his bat suit off. Wounds and open sores cover 75% of this body.
When Cole was born he did not have skin on his right leg or foot. His mouth had no skin. His fingers were blistering.
Cole’s foot is contracted (clubbed), he cannot bend his right ankle or knee. I have been trying to contextualize his condition and the only conclusion I can draw is that Cole entered this world suffering and it has never stopped. Every single day of his life is a battle.
Joining Cole in his battle are his loving parents, Jennifer, a full time teacher, and father Chris, Cole’s full-time caregiver.
Cole is really funny. I spoke to Cole on Zoom call and he was cracking these clever jokes. His recall was also astounding. I don’t remember being six months old, Cole does. Cole uses humor to make people feel comfortable around him. Jokingly, I asked if he was a genius or something?
Joke was on me, Cole’s a card carrying member of MENSA with a once in a generation mind. Cole’s a gamer. It’s how he inserts himself into the world and connects with friends, having been on a remote schooling program since he was in 6th grade. Cole excels in his Journalism and Screenwriting classes. He hopes someday to be a screenwriter.
Cole can walk but his mobility is increasingly diminished. More and more he relies on his wheelchair, a clunky relic that badly needs a Next Gen upgrade.
Cole’s deteriorating mobility has an even greater need. 2-3 hours a day revolve around Cole’s wound care management. Cole said, “I’m always inflamed and itchy but now there’s a constant shearing of my skin.” This requires layers of silicon and foam dressing, and lots of gauze. On “dressing change day” all bandages must be removed and refreshed. The process is both awkward and painful.
Thanks to our incredible monthly Chive Charities donors, we've provided Cole with a $14,000 grant to cover a year's worth of wound care items, a high-low adjustible bed, travel for upcoming doctor visits, and a new gaming PC with adaptive hardware to bring a smile to his face during those tough days. But there is much, much more left to be done.
Cole has outgrown his bathtub. Coupled with his decreased stabilization, it’s a nightmare. Once in the bathtub, he uses a needle to drain the blisters then soaks in a bleach bath while removing the scabs and dead skin. Showers are out of the question, the water pressure would shear his skin off. The consequences of not meticulously tending to his wounds will increase his chances of getting skin cancer.
Cole’s family has requested a Safe Step Tub in which he can simply step in and out of the tub because it has a door. More importantly, the specialized tub provides micro-soothe technology. “The suds” will not only remove the dead skin, but will carefully remove toxins and impurities in soothing manner. Cole’s doctor told me, “The single biggest benefit to Cole’s health and well-being is the tub.” Cole’s doctor has prescribed the tub but insurance has failed to provide the tub.
(Donate right here)
American poet, Muriel Rukeyser, once said “The universe is made of stories, not atoms.” Said another way – a pulse not a pixel.
There are about 25,000 others out there like Cole who desperately need their stories told. But Cole’s story, and the stories of others with EB have scarcely been written. This flash campaign today will insert the story of EB into the universe. Once we accomplish that, the EB community-at-large will begin receiving the help and attention they deserve. There is more hinging on the story than we think; the execution is all.
But we must do the work now. This family has fought so hard. The road seems endless sometimes. We have a chance to replace three hours of pain a day with something soothing, to provide the suds! And in so doing, provide salvation. Cole has limitations physically, but mentally his potential is limitless. I’ve always said that our recipients give more back to the world than we ever give them. In this case, Cole could change the world.
The goal is to provide Cole with a $16,000 Safe Step Tub and a new $4,000 AirWolf Wheelchair. The goal is set at $20,000.
Donate RIGHT HERE!
This is Cole yesterday. Cole’s body burns so many calories creating fresh skin to repair his wounds, he simply can’t maintain the requisite caloric intake to keep up. Things have deteriorated to the point that Cole had surgery today to insert a supplemental feeding tube (G-Tube) to provide nutrition and hydration. Imagine trying to plant a garden on the sun, then watering it. Cole is home today, resting and watching as his story goes live.
Before getting off my call with Cole, I felt like I was missing something. So I asked if there was anything in the world you could have, what would it be?
Cole joked, “Be careful what you wish for.”
“A bigger room.”
Turns out they are already half way home. Cole’s cramped room abuts the back porch.
Anything beyond the $20,000 will go towards blowing that left wall to the moon, then expanding Cole’s bedroom into the porch so Cole can have freedom and mobility he badly wants.
Thanks for caring, Chivers. So many of us at Chive Charities have been working on Cole’s story for months. Now we hand it over to you. Please be generous, nobody deserves it more than this brave young boy.
John and the Chive Charities team
PS – If you enjoyed this story PLEASE share to get the word out. Thank you!
Consider joining the small group of heroes at The Green Ribbon Fund who made this story possible.
UPDATE #1: $20,000 in an hour flat! Giving velocity at $375 per minute and increasing. You sent it!
UPDATE #2: $32,000 and picking up steam! Let’s get Cole his room!
UPDATE #3: $45,000!!! I will have an update from family shortly, stay tuned!
UPDATE #4: $65,000. I just received a video of the moment Cole saw we surpassed the goal. I will post it to theCHIVE tomorrow morning and it’s everything. Keep it going, his new bedroom is getting bigger by the minute!
UPDATE #5: $75,000??!! Just spoke to Cole’s mom, “This is amazing!!!! I know you tried to prepare us for today… but it’s beyond anything I’d imagined. Just AMAZING!!”