And sometimes, you want to take a shortcut - doing anything you can to cut to the chase and just be home.
Three years ago, Jennifer Rios was anxiously awaiting genetic test results on her toddler son’s condition. In the early days after his birth and the nearly two years that followed, she had noticed red flags and concerning symptoms that doctors couldn’t name. She didn’t know it yet, but she was on the long road home. Physicians mentioned phrases like “hypertonia,” “developmental delay,” “feeding difficulties,” and “poor or absent speech.”
But phrases are just part of the puzzle, like a mix of words laid out on a table, waiting to be clicked into place. She needed to know what it all meant for Steven.
When the results came back, those phrases joined together to form the big picture. Steven was diagnosed with Cerebral Palsy and a rare genetic condition called MEC P2 Duplication Syndrome, the latter of which occurs almost exclusively in males and is caused by the same gene as Rett Syndrome. (You might remember Lily, a Chive Charities recipient from this past December who was diagnosed with that very condition.)
It’s a difficult and life-limiting disease, with only half of affected individuals surviving past age 25.
Today, Steven is five years old and just getting started on his journey. While he’s unable to walk or talk, his personality finds a way to shine through, and he could spend hours listening to Cocomelon and Baby Shark, visiting the park, and getting all the attention he can command from his two older sisters.
There’s a phrase that’s often quoted by seasoned parents that says, “The days are long, but the years are short.” It’s a mantra that runs through the mind of Steven’s mom, Jennifer, nearly every day.
Her sweet little boy in the adorable blue glasses requires near-constant care. There’s no break, no respite, no vacation days - and yet, every day with him is a gift.
“Steven isn’t able to communicate verbally,” Jennifer told us, “but that doesn’t mean he can’t express himself. He’s the happiest child, always smiling and giggling, and he knows that he’s very loved and loves us all deeply in return.”
The days are long, but the years are short.
As part of Steven’s care, Jennifer drives him nearly two hours each way to critical appointments with 10 different specialists, including an audiologist, ophthalmologist, geneticist, neurologist, orthopedist, gastroenterologist, and more. The family makes the trip from their home to Tucson multiple times each month in a well-worn van with over 230,000 miles on the odometer. This is not a vehicle you want to use for a long, leisurely drive.
In addition to general wear-and-tear, their current van is not wheelchair accessible, which is a pretty big deal since Steven requires the full-time use of a wheelchair. He’s now approaching 50lbs, and lifting and carrying him into the van (along with all of his medical equipment) is less than ideal.
But Jennifer is a single mom with three kids, one of whom is medically complex, and she was stunned when she began researching the cost of ADA vans. This is, unfortunately, extremely common for families caring for a rare medical individual - or really, for anyone in need of a wheelchair-accessible van. It’s part of the reason why Steven is already the 6th person Chive Charities has met this year who desperately needed help in getting one (and it’s only April).
These families struggle with all of the same things as those without medically fragile loved ones - making lunch, getting to the grocery store, helping with school work, bath time, bedtime routines - in addition to challenges most families don’t have. Things like astronomical hospital bills, countless pieces of medical equipment, 24/7 nursing care, and reliable transportation that can accommodate their family member’s needs.
Most families don’t have an extra $45,000 - $60,000 to spend on a wheelchair-accessible van. So what are they supposed to do? Thankfully, many find their way to Chive Charities. Jennifer was one of them.
She first visited a dealership to see what she could do on her own, but quickly realized that covering the cost herself was out of the question. “While I was there, an incredibly nice lady named Christine told me about Chive Charities and the amazing work they do...including providing ADA vans to families in need,” Jennifer told us. “When I got home, I Googled the name and the Chive Charities website was the first thing that popped up.”
It had been a long road that got her to that point, but Jennifer finally found the help she was looking for.
Because of our dedicated donor family, Chive Charities partnered with AMS Vans to change Jennifer and Steven’s lives forever. They’re now the proud owners of a 2019 Toyota Sienna for a total impact of $45,950.
Now, this sweet little boy in the adorable blue glasses can listen to his beloved Cocomelon and Baby Shark, feeling the breeze on his face and watching the road open up before him, all from the comfort of his safe and comfortable wheelchair.
Now, Jennifer and Steven look forward to taking the long way home, enjoying every minute of the time they have together. The days are long, but the years are short.
It’s hard to believe that in the eight years since Chive Charities was founded, we’ve granted more than 164 wheelchair-accessible vans to families in need. That’s only possible because of donors like you, people who contribute $5 or more every month to change another person’s life. That’s worth saying again.
Our donors have been there for 439 recipients (and counting) who had nowhere else to turn. A $10 monthly donation helped build Eason a fence. A $25 monthly donation helped give Dennis a service dog. A $15 monthly donation helped give Cole a six-month supply of wound care supplies, power wheelchair, and the blueprint to a new bedroom.
It doesn’t take a lot. It just takes you.
That’s what it means to be part of the Chive Charities community. That’s what it means to get in the car with us and come along for the ride of a lifetime. We have room for more. Are you in? DONATE HERE.