Quality of life can mean so many different things to so many different people. When we pull the curtain back on our Chive Charities recipients, we see how granular that can get. Sometimes, it’s physically big. Sometimes, it’s an accessible van that can accommodate four wheelchairs. Sometimes, it’s a major home renovation that (literally) opens the doors to more opportunities.
And sometimes, it’s so seemingly insignificant that it can border on not being significant at all. Like a backyard fence or hand controls. Only this fence provides a safe space for a child with a developmental delay, and the hand controls give a teenager the independence to drive their own vehicle. Seemingly insignificant, but not insignificant at all.
That brings us to Ezra.
For him, quality of life looks a lot like getting outside and enjoying his life as safely and comfortably as possible. It’s not a big, flashy grant item. But it is life-changing nonetheless.
Ezra is five years old now, and when he was born, it was immediately apparent that something wasn’t quite right. He was floppy and lacked tone, and he also refused to eat from either the breast or bottle. His first moments in this world were spent under the bright fluorescent lights of the NICU, undergoing various tests to rule things out or paint a clearer picture.
Six months would go by before any answers were uncovered. Ezra was diagnosed with Spinal Muscular Atrophy (SMA), Type 1, the most common and severe form of the disease that affects nerves and muscles, causing them to become increasingly weak.
“At that point, California didn’t do a test for SMA in the newborn screen,” said Ezra’s mom, Alexia. “And those six months of searching for a diagnosis cost us time and muscle ability.”
(To date, 48 states now screen for SMA. Within three years of SMA being added to the federally recommended list of diseases to screen for at birth, Cure SMA and its advocates have ensured that 98 percent of babies born in the U.S. are now screened for SMA at birth. Only Nevada and Hawaii remain.)
For Ezra, his SMA has caused a lot of challenges. It progressed, eliminating his ability to eat, leading to a lack of control of his limbs, and causing numerous breathing problems – so much so that he began choking on his saliva. Eventually, his family agreed to a trach, which freed him up to breathe without difficulty and removed all the CPAP/BiPAP equipment from his face. While he still lacks control of his legs, he does have limited dexterity in his arms.
As much as his SMA has impacted him, it also hasn’t really changed much about who he is. He started kindergarten this year and, as Alexia told us, “loves the ladies.” He has a great relationship with his two siblings – an older brother named Dom and a little sister named Ariel.
His mind is so sharp, and he enjoys things like music, people-watching, camping, and traveling.
Those last two points are pretty critical, but they’ve been made more difficult since he became vent-dependent. (They also lived through Hurricane Harvey soon after relocating to Texas, losing power for so long that they were forced to admit Ezra to the hospital to help power his machines.)
Ezra is part of a military family, and for the last eight years, they’ve moved more often than not. Most of their family is back in California, but it’s been nearly impossible for them to travel or visit because of Ezra’s care requirements.
Beyond that, Ezra and his family love to camp and spend time outdoors with one another. They dream about visiting Sequoia or Yellowstone National Park or even just taking their son back out into the places he loves the most with no worry about his equipment or breathing.
Not too long ago, Alexia shared these dreams with a social worker at the children’s hospital in Virginia. That person gave her the name of an organization she thought might be able to step in and help: Chive Charities.
Ezra and his family hoped to get a rechargeable, battery-operated generator called a Jackery that could be used for travel and camping. Our donors helped take care of that. And when our friends at DuroMax heard about their needs, they graciously offered to donate a larger generator that could provide peace of mind and critical backup for more serious power outages or support.
Ezra also asked for his very own swing, something he hasn’t yet been able to do but desperately wants to. Donors like you got him that, too. In total, the Jackery generator and therapy swing totaled an impact of $6,415. (Again, huge thanks to DuroMax for supporting the family with a brand-new generator at no cost!)
For Ezra, it was two simple things that had the potential to make his life better. It’s not flashy. It’s not even big. But it is still life-changing.
“A lot of people can learn from him,” said Alexia. “He’s so happy-go-lucky, doesn’t get upset, and is almost always smiling despite all he endures. He’s so special. Plus, thanks to this help, we can travel to California to visit our family!”
A generator and a swing. The freedom to travel and the freedom to be a kid. Seemingly insignificant, but not insignificant at all.
At Chive Charities, we’ve seen what big and small grant items can do to change a life. It’s never just a fence. Just hand controls. Just a van. Just a home renovation. It’s never just a generator or a swing. It’s the things these recipients need that no one else will provide.
And each time you read their stories, comment on a post, or reach into your wallet, you show them what it really means to make a life better. Quality of life can mean so many different things to so many different people – but no matter what it is, your donations help give it to them. They need you, and so do we. Let’s make more lives better. DONATE HERE.