Waiting for them to sleep through the night. Waiting for them to sit up unassisted. Waiting for them to laugh, clap their hands, and say their first word.
Waiting is tough in any circumstance, but when you’re waiting longer than the other parents around you, you’re waiting begins to come with worrying.
Jackie’s first year as a new mom had both. When her son, Oswald (“JR”), was born, she spent the first few weeks just enjoying him. But as the weeks turned into months, she began noticing little things that started to give her pause. JR wasn’t making eye contact with her and didn’t seem to have much strength in his arms and legs. When he wasn’t sitting up by eight months or walking after his first birthday, her waiting became worrying.
“I took him to the pediatrician, and they told me to be patient,” Jackie told us. “They told me I was worrying over nothing and that he would do things in his own time.”
Still, something nagged at her. And it would take six years to resolve it.
Eventually, she was referred to a children’s hospital, and JR was genetically tested for any conditions that might be impacting his development. When the results came back, he was positive for a rare disorder called Pelizaeus-Merzbacher disease (PMD). PMD is a progressive and degenerative central nervous system disorder that deteriorates coordination, motor abilities, and cognitive function.
The waiting was over, but the worrying was not.
Today, JR is 27 years old, and while he’s non-verbal and non-mobile, he’s incredibly happy and loves to be around other people.
His all-time favorite thing to do is watch episodes of SpongeBob SquarePants, and the smile on his face when he met one of the characters at Universal Studios in Orlando is priceless.
He also likes to play bingo and dominoes and goes out on regular neighborhood walks with his nurse and aide. “He’s a funny guy,” Jackie smiled. “You have to listen keenly to understand him, but he’s got a great personality despite his challenges.”
Jackie has remained JR’s primary caregiver throughout his life, and while she considers it a privilege to be there for her son, it’s taken a physical toll on her in recent years.
“For many years, I lifted him in and out of our vehicle when we needed to leave the house,” she explained. “But as he’s gotten bigger and heavier, that’s gotten more difficult. It’s almost impossible to do that by myself now, and poses a huge safety risk to us both.”
It got to the point where JR was rarely able to leave the house because transportation was so challenging. It didn’t take long for Jackie to jump to action, determined to find a solution for her son.
AMS Vans is one of our most impactful partners, and Dallas and his team just so happen to be headquartered in Lawrenceville, GA – the same city where JR and Jackie reside. So one day, she got in her car and drove over, hoping for a solution to solve their transportation woes.
“I wanted to see if I could possibly finance a wheelchair-accessible van,” Jackie said. “But they’re so expensive! It wasn’t going to happen.”
As she was talking to the AMS Vans team, they heard more of her story and learned about JR and his rare medical condition. Then they asked her if she had ever heard of Chive Charities.
That one simple conversation was the beginning of a life-changing experience.
When Jackie got home, she looked up Chive Charities and began the application process, keeping her fingers crossed that her family might be selected to receive an ADA van.
At Chive Charities, we jokingly refer to ourselves as the Oprah Winfrey of wheelchair-accessible vans.
It’s become one of our most requested and most granted items, and that’s largely because it’s not covered by insurance. It’s baffling because, for those who require the use of power wheelchairs, it often traps them in their homes with little to no accessibility to the outside world.
The average electric wheelchair can weigh nearly 300 pounds on its own, and it’s nearly impossible to break it down and easily put it together again. So if a family doesn’t have access to an ADA vehicle, they’re left with few options for transportation.
As Jackie noted, wheelchair-accessible vans are expensive – often eclipsing $50,000. And unfortunately, as our most requested grant item, that means we can only say yes to a limited number of applicants without blowing our budget.
When Jackie applied, we had received so many van requests that our timeline had been extended by several months. Jackie and JR applied in June 2022, but due to the influx of van applications we had received, we were unable to review their request until May 2023.
Once again, Jackie was waiting…and worrying.
“I’ve been able to care for JR at home for his entire life,” she told us. “But I was starting to get concerned that with so many limitations, I might have to consider moving him into a care facility. I didn’t want to do that, but I also didn’t want him trapped at home.”
Thankfully, because of the generosity of our donor community, the waiting paid off. Chive Charities approved the purchase of a wheelchair-accessible van from our partners at AMS Vans – the same team who referred her to us – for a total impact of $48,771. A red 2020 Chrysler Voyager will be in their driveway in no time.
“A year of waiting was nothing,” Jackie said. “This will change our lives.”
Even better, this family will be able to stay together while experiencing more of the world outside the walls of their home. When Jackie tried to find the words to express her gratitude, she could only wipe the tears from her eyes.
Because of our donors, we’re able to bring relief to so many families who’ve been waiting for help of their own. Our mission is to make the world 10% happier, and we intend to keep pushing forward until we can say yes to every last one of them.