It was in the early fall of 2016 that Holton's Heroes was introduced to Camp Cranium, a wonderful nonprofit summer camp that provides one-of-a-kind experiences for children ages 6-18 with brain injuries, and up to 21 if they're still in school.
Brad and Bridget Turner, parents of Holton's Heroes recipient Ally and founder of their own nonprofit—Just Fight Foundation—arranged a phone call between the three organizations. That conversation was all it took for Holton's Heroes to pledge their support for this amazing camp for children who are often forgotten when it comes to outdoor activities.
The HH team learned some remarkable things about Camp Cranium on that first call, but what really struck them was discovering that every camper that attends is given the opportunity to participate in all the activities, from rock climbing to zip-lining to swimming. While that may seem like an obvious goal of a recreational environment like sleepaway camp, keep in mind these children have suffered severe brain injuries.
These are kids—and we must never forget they are all simply kids—who have survived strokes, drownings, brain tumors and even abuse. Often children like this are ostracized or simply unable to be supported at these types of physical programs, but at Camp Cranium they are literally welcomed with open arms.
Campers form lasting friendships, improve their self-confidence and independence, and achieve goals they—and their parents—didn't believe were possible. “Building ongoing social networks and support with our families, children, and volunteers has been incredible to watch, grow, and develop over the years. This inclusive group represents a sense of family keeping us all connected in this journey. To see this be a nucleus of support for kids and their families is, I think, the biggest accomplishment of camp over the past 10 years,” Camp Cranium Board VP Sarah Krusen told us.
Holton's Heroes donated three camp sponsorships—also known as "camperships"— for this past 2017 summer session, which happens to also be the 10th anniversary of Camp Cranium. Earlier this year, Holton's Heroes was introduced to three incredible young people—Luis (19), Ava (12), and Bryan (8)—who would officially become the first Holton's Heroes representatives at Camp Cranium.
Let's learn more about these three happy campers below:
BRYAN
Describe Camp Cranium in One Word: Amazing
Favorite Camp Activity: The Rock Wall
Favorite Camp Food: Breakfast Sandwich
What Would You Do Differently Next Year: Try Medium Rock Wall
New Friends Made in 2017: Reese, Cristabelle, and James
8-year-old Bryan, the youngest of our three camp heroes, lives in Warminster, PA, with his parents and little sister Emily. He suffered a stroke during a swim lesson in January of 2015, which left him with limited use of his left arm among other physical weaknesses.
He was 6 at the time and recalls being confused at what was happening to his body when he suffered a hemorrhagic stroke that was brought on by a ruptured arteriovenous malformation (AVM), an abnormal tangle of blood vessels in his brain that had weakened and burst suddenly. “My arm started drifting downwards [in the pool]. I couldn’t move it at all. I thought, ‘This is strange. Why do I feel nothing in my arm?’” Bryan describes.
Bryan was rushed to Children's Hospital of Philadelphia after a local hospital discovered a brain bleed. He needed emergency surgery to get the bleeding under control, as well as to relieve pressure that was building inside his skull.
Fear not, however, as Bryan is a fighter, and after a few grueling months of inpatient treatment and therapy, he was discharged from the hospital. "Bryan has been recovering very well," his mother, Melissa, told us. "He's doing great in school, taking hip-hop classes, returned to his old soccer league, and is [overall] much stronger."
Of course, all is not simply back to normal, as Bryan still has "weakness on his left side, but is constantly working in therapy which is focusing on fine motor skills now," Melissa added. Bryan needs to wear a leg brace and a wrist splint but he's come such a long way that his goal to ditch them one day feels attainable.
"Camp Cranium is an incredible experience for the kids—and their parents!" Melissa proudly claims. "As parents who have been used to constantly monitoring his days during his recovery, dropping him off at his first sleep away camp [...] was a little nerve-wracking."
It didn't take long for Melissa and her husband Tony to feel at ease; they could feel the confidence it gave Bryan to be able to spend time safely away from home. "He loved his time at camp," Melissa told us. "That feeling of independence, that we trusted him to do something like [going to camp] on his own really had a positive impact on him that we recognized right away."
“These families need support and a community where they can feel understood and welcome. Holton’s Heroes helps make that happen.”
AVA
Describe Camp Cranium in One Word: Fun
Favorite Camp Activity: Swimming and Making Friends
Biggest Camp Accomplishment of 2017: Being Part of a Relay Race
Favorite Camp Food: S'mores
What Would You Do Differently Next Year: Ring the Rock Wall Bell
Twelve-year-old Ava is the youngest of four, with siblings Anthony, Laura, and Joe. She lives in Philadelphia with her mother Kim, who works as a NICU nurse at Children's Hospital of Philadelphia (CHOP).
Five years ago, Ava was hit by an unlicensed and uninsured motorcyclist in front of her home while riding her Razor scooter with friends. Unfortunately, Ava was not wearing a helmet and suffered a severe impact to her head.
The first hospital she was sent to wasn't able to intubate her, which resulted in lack of oxygen to her brain. This massive set back only added to the brain damage Ava received that afternoon before ending up at CHOP.
"From there, she underwent several major surgeries in the first three days. She had an emergency craniotomy, removing half of her skull, and had several pins placed in her left leg. Since then, Ava has endured through the toughest battle of her life—traumatic brain injury recovery," Ava's sister Laura wrote on a gofundme page set up to help afford a handicapped accessible vehicle.
Ava is a true warrior and currently suffers from "intractable epilepsy, aphasia, poor motor skills, and coordination dysfunction," a prognosis that scares off most summer camps but is openly welcomed at Camp Cranium where children like Ava benefit from two-on-one care for the weeklong session.
“What I love about having Ava [at camp] is just to see her family interact with her,” said Sarah Krusen, Camp Cranium's Board VP, referencing Ava's brother Joe and sister Laura, who selflessly volunteer as Camp Cranium counselors every year. While Ava's sister serves as one of Ava's counselors, her brother Joe works with the older boys.
This is now Ava's fifth year attending Camp Cranium. "I'm very proud of how far she's come," Laura told us. "When she was on the zip line, she actually did it on the regular one and was able to hold herself up without extra help from the harness. I was very proud about that."
Of course, that isn't the only highlight offered by Camp Cranium. "[I think what's great about Camp Cranium is] her being around kids and kids wanting to be around her," Laura admits. "Most of their lives revolve around therapy so it's great to see them just be kids. See how much they enjoy being kids is just great. They get to be kids for five days."
“[Camp Cranium] gives these kids hope. These kids have so many different types of challenges that we can’t understand. Being in the real world is scary and I really think this experience gives them hope that there are people that care and they can actually feel normal.”
LUIS
Describe Camp Cranium in One Word: Heaven
Favorite Camp Activity: Swimming in the Pool
Biggest Camp Accomplishment of 2017: Rock Climbing
Favorite Camp Food: All of Them
Did He Miss His Family?: No ;)
At 19, he's the oldest kid Holton's Heroes has been able to help. Luis has had a difficult journey; he witnessed his younger brother's sudden and tragic passing in day care when Luis was only a toddler. However, that incident led his parents to discover that Luis had a heart condition known as Long QT Syndrome (LQTS), which is essentially a disorder of the heart's electrical activity. If not controlled, stress or even exercise could cause sudden, uncontrollable, and dangerous heart arrhythmias.
On May 8th, 2011, as Luis' mother Wendy tells us, "everything changed."
Luis had been over a friend's house to play when Wendy received a knock on her door. It was the mother of Luis's friend with devastating news: Luis had been rushed to the hospital after a suspected heart attack and was in critical condition.
The EMT report claims his heart actually stopped beating, so technically Luis had died before doctors were able to revive him at the hospital. "For three weeks after that all I heard was that I needed to be prepared for the worst but lucky for me, God had other plans," Wendy told us.
"Due to lack of oxygen in his brain, I was told that he was going to be a 'vegetable' but that was fine for me," Wendy explained. "They suggested that [...] he should be taken off the machines and of course I replied, 'No!'" Wendy, a grieving mother grounded firmly in her faith, stood strong as she felt her son's fate was in someone else's hands.
After a grueling three-month hospital stay, Luis came home. "Little by little, God started to show me his plan," Wendy says. "A year after the incident his cognition started to show and we were able to communicate with hand gestures and [head movements]."
As of last year, Luis not only graduated high school, but he did it with honors, no less. "My hope for him, of course, is to be able to see, talk, walk, and play video games, which he used to enjoy so much," Wendy adds.
"Luis always has a smile on his face and has become more responsive over the years since he's been coming to camp," Sarah Krusen of Camp Cranium tells us. "He's very social and interacts with everyone. Of course his shining moment was setting the style bar high at the summer dance in his three-piece suit."
Luis also has a lot of fun in the pool, as he's known to be a big fan of water play. "His physical limits were not to be found as a barrier this summer at camp, as he did the rock wall and zip-line with ease. He's down for anything," Sarah adds.
Camp Cranium is a special place for Luis because it's where "Luis does not have any disability and is able to be just a kid having fun just like the rest of the kids," his mom explains. "Unfortunately, when you have someone with this type of disease you find out the hard way that there are not many places that are willing to help, [but] charities such as Holton's Heroes can make somebody's life a lot easier, even if it's just with something as simple as sharing Luis's story."
“I hope that [sharing my son’s story] is helpful to other families that might be just starting to experience such a big change in their life. Please know that there is hope.”
Check out some photo highlights of Luis, Ava, and Bryan's time at Camp Cranium this summer (below).
Photo credits: Monica Wheeler & Camp Cranium
Holton's Heroes sponsored three incredible campers to attend the 2018 summer session of Camp Cranium—a camp dedicated to providing a one-of-a-kind experience for children with brain injuries.