Strength has been the underlying theme in Barendhts’s life before taking his first breath. On April 6, 2001, his parents were involved in a serious car accident that triggered his premature birth. His mom was only six months along. Doctors rushed to save him, holding his impossibly small, one-pound body in their hands.
Not long after, they shared the news with his family that he had cerebral palsy. He would need to call on that strength of his time and time again. And he did. He would. He has.
As the baby of the family, Barendhts had a full team of caregivers and supporters. His parents had always been hard workers, his mom working long hours at the airport while his dad logged mile after mile as a truck driver. His three older siblings - two girls and one boy aged 6 to 12 - looked out for one another.
From the beginning, he’s had them all wrapped around his finger.
“He has always been the bubbliest, happiest kid,” said his sister, Esteniolla. “God blessed him with the brightest personality, and people just fall in love with him.”
Barendhts and his mom, Belene, were especially close. As her health began to fail, she stopped working full-time and became her son’s primary caregiver. Over the years, her condition worsened, and she struggled with many serious complications. So, in 2019, Belene approached her daughter Esteniolla and asked if she would become Barendhts’s official guardian.
“I had always been there to find resources or help my mom manage his care and appointments,” Esteniolla told us. “I was already so familiar with his needs.”
Esteniolla didn’t know then how quickly she’d be called on to fully step into that role.
She and her husband planned to move from the Boston area to Texas, but it took almost a year for their house to be built. She ended up staying with her parents and helping with Barendhts’s day-to-day needs.
“Looking back, that time was so special,” Esteniolla told us. “I realize now that God gave me all that extra time with my mom, knowing what was coming next.”
And what came next took their breath away.
On February 9, 2023, their mom, Belene, suddenly and unexpectedly passed away from health complications. As the family reeled from their devastating loss, Esteniolla turned her attention to Barendhts. He was now 22 years old and aging out of his public school that coming April.
That left her with less than two months to find a new path forward for him. She also shared with us that another organization had been working with the family to completely remodel her mother’s home to make it more accessible for her and Barendhts. As they moved forward with renovations, the organization discovered that the house wasn’t habitable, and they wouldn’t be able to stay.
“It was a big period of transition,” she said. “My husband and I cared for him during those months but knew we needed a long-term solution. I got to work finding him a group home where he would be happy and cared for.”
Barendhts has complex medical needs as a result of his diagnosis, and he’s also non-verbal. “Don’t think that means he can’t communicate,” Esteniolla joked. “He just has his own personalized language.”
She also shared that his social intelligence is extremely high. He is very sensitive and aware of others' behavior and uses his charm and bright personality to win people over.
“I’ll give you an example,” Esteniolla shared. “Barendhts has a hard time remembering to cough and clear his lungs. So I would sit next to him and fake cough to get him to mimic me. Well, then I started noticing that every time I came and sat with him, he would start to fake cough,” she laughed. “He must have been thinking, ‘This seems like a game you like to play, so let’s do it.’”
Through a lot of research and a lot of vetting, Esteniolla finally found a place that her brother could call home. He quickly became best friends with another resident named Ricky and seemed to settle in as well as could be expected.
But for someone who spent 22 years of his life with the same caregivers, it was a hard transition for him. His family knew what foods he liked, how to help him eat, and what shows he wanted to watch (“Definitely ‘Jeopardy!’, ‘Wheel of Fortune,’ and ‘The Price is Right,’” Esteniolla said.)
Once he was in the care of direct care staff he’d never met, it was overwhelming. Esteniolla tried to help by creating an “About Me” binder that shared all of his favorite things and personal intricacies, but it’s been tough.
Frankly speaking, he misses his mom.
“He will still use his eye gaze device to ask about her,” Esteniolla explained. “And he would look around to try to find photos of her, too.”
“You’re going to be happy,” life said. “But first, I’ll make you strong.”
As of today, Barendhts is in a rehabilitation center, recovering from a series of events that led to malnutrition, an infected wound, and later, life-threatening sepsis. Soon, they’re hopeful he’ll recover and return to his new home, but one huge need still remains.
Barendhts is a light to all who are lucky enough to know him. He quite literally spreads joy everywhere he goes. But nowadays, it’s much harder to get him to go. That’s where Chive Charities and our amazing community of donors comes into play.
Before she passed, Belene (and Esteniolla) reached out to Chive Charities to inquire about getting an ADA van for Barendhts. He loves to take car rides, spend time outside, and even get out on the water for adaptive kayaking. They applied for a grant and waited with baited breath to see if they’d be selected.
Tragically, Belene would be gone before that help arrived. But that help did arrive.
Through the support of your monthly contributions, we fully funded the cost of a 2020 Chrysler Voyager for Barendhts and Esteniolla for a total impact of $50,000.
We could almost see the weight lift from Esteniolla’s shoulders, and she thanked us, then detailed all of the appointments, family visits, road trips, and activities they could now do together. And then she added a line that stopped us in our tracks:
“Getting this van feels like a tribute to our mom,” she said. “It was a dream of hers for so long, and now it’s come true.”
For the special guy with a beautiful spirit and sister with incomparable determination, it’s a fitting gift. They’ve long shown the strength to face any challenge – it’s time now for more of the happiness.
This week, as you gather around the table with your friends and family and reflect on all that you have to be grateful for, we hope you’ll think of the 600 Veterans, first responders, military families, and those with rare medical diagnoses like Barendhts who are doing the very same. They’re thankful for the life-changing support of people like you. We’re thankful to be part of it. Help us help more and DONATE HERE.