From across the room, his grandmother and primary caregiver, Audrey, stepped into the frame. She introduced herself before turning to her grandson and helping him from his seat in the living room to the bathroom. At 10 years old and 140 pounds, it was no small task.
While they were gone, Westin’s palliative care coordinator, Danielle, picked up the phone with a cheery smile and began to share more about him.
When Westin was two months old, doctors suspected he had complex health issues, and testing began. He had a liver biopsy at six months old, and a little over two years later, a muscle biopsy that confirmed he had muscular dystrophy. “But don’t worry,” they told the family. “He doesn’t have Duchenne’s.”
Despite the worry and anxiety that enveloped them, there was relief at that news.
Duchenne muscular dystrophy is a multi-systemic condition affecting many parts of the body, which results in the deterioration of the skeletal, heart, and lung muscles.
It’s one of the most severe forms of inherited muscular dystrophies, and no known treatment halts the progression; available treatment options are palliative.
The family already had so much on their plate. Westin’s father had left not long after his birth, and his mother faced a serious health crisis of her own.
She underwent a routine surgery but suffered significant complications during the procedure. As a result, she nearly died and was given a permanent trach and placed on a ventilator. She now requires full-time care and resides in a long-term care facility. Westin’s grandparents, Audrey and George, became his primary caregivers.
“It was around the same time that his mom went to the special care unit that a neurologist reviewed Westin’s case and delivered the news to us,” Audrey said. “The other doctors were mistaken, and he was officially diagnosed with Duchenne muscular dystrophy – the worst type.”
“By the time he was 7 years old, he was walking one day and unable to walk the next,” she explained. “At first, he enjoyed the wheelchair, but now, since it has become permanent, it has been hard on all of us physically, mentally, and emotionally.”
When Westin returned to the room, his sunny disposition and warm smile seemed to belie that truth. In many ways, he is every bit the 10-year-old boy you’d expect him to be. Video games are clearly a real favorite, and if they let him, he’d spend most of his time playing Roblox or Minecraft. And he also likes going to aquatic therapy and spending time in the water, though that’s become more challenging as his mobility challenges have increased and transportation has been difficult.
Much of that can be attributed to the medication Westin takes. Steroids are the only medicines currently available for all patients that can slow down the skeletal muscle damage and weakness caused by Duchenne. But they come with side effects of their own. In 2020, Westin weighed 40 pounds.
Now, at 10 years old, he’s closer to 140. He and his grandparents have to move more weight but with weaker muscles.
“We’ve found that we have to figure out our own ways to take care of him, and in a way that keeps us and him safe,” Audrey shared.
Westin can ride the bus to school, but any additional travel outside of that is way too difficult to manage. They simply don’t have the vehicles for it.
While his diagnosis also qualifies him for hospice care, he receives a weekly infusion at the University of Florida Hospital for Gene 51 replacement therapy. Some of his specialists are an hour and a half drive each way.
Thankfully, Westin and his grandparents also have Danielle. She’s his Child Life Specialist through the local pediatric palliative care program, and as soon as she recognized their need for safe and reliable ADA transportation, she got to work.
Not long after, she found Chive Charities and helped Audrey and George apply for their grandson.
“We would love a van not only for his medical appointments but to take him to see his mother at her nursing home, along with places that he can go to be a normal kid,” their application read. “He loves the arcade, but getting him there in his power wheelchair is impossible. Along with grieving the loss of walking, he misses the socialization of being a normal child.
“His grandfather and I live on a fixed retirement income,” Audrey explained. “We try our best to provide for his needs, and we will spend every last dime to support our grandson, but an accessible van is unattainable for us.”
Well, that just happens to be our specialty. Through Danielle’s referral, we received their request for help, and through your selfless donations, we were able to respond with a resounding yes. Our Chive Charities donors funded the total cost of a 2019 Dodge Grand Caravan for an impact of $44,118.
“We sincerely appreciate your generosity,” Audrey said. “This is a life-changer for all of us.”
Westin, the boy with the big smile and an even bigger heart, can put those VR goggles aside for a bit and experience a real arcade again like any other kid. But despite his love of video games, there’s another love that trumps it all.
“When we get the van, the first trip I want to take is to see my mom again,” he said.
But before anyone in the room could even pause to shed a tear, he paused and added, “And then I want to go to Buc-ee’s.”
Thanks to donors like you, it won’t be long before he takes that first ride in his new ADA van across that Florida/Georgia line for a long-awaited reunion with his mom. (And yes, maybe some brisket tacos along the way). Home is wherever they’re all together. So take me home, country roads. DONATE HERE.