“From the very beginning, Mason was different.”
Amber knew that her son was going to face challenges long before he was born. At a regular ultrasound appointment, she was told that he had a clubfoot, one of the more common congenital foot deformities. It was still a shock and she was unsure what to expect.
Little did she know, it would be the tip of the iceberg.
Mason’s birth was relatively uneventful and he underwent corrective surgery at three months old to repair his clubfoot. “I noticed immediately that something was up,” Amber said. “He was poked and prodded so many times - even having an IV placed in his head - but he never cried. Eventually, even the nurses noticed that he didn’t really respond to pain.”
Following his surgery, Mason had a second hearing screen, having already failed his newborn test. Once again, he failed, and because he had another existing abnormality (the clubfoot), he qualified for genetic testing.
When the doctor came into the room to tell her the results, she could see it written all over his face. The news wasn’t good.
Mason was diagnosed with an extremely rare condition called Chromosome 3, Trisomy 3q2, a disorder in which a portion of the third chromosome appears three times rather than twice.
“After he told us the name, he said that Mason would never crawl, walk, talk or even recognize his family. He wouldn’t know who we were,” Amber said. “It was beyond devastating, the worst news we could have imagined.”
But someone forgot to tell Mason what he couldn’t do. While he was admittedly behind on some developmental milestones, he was still hitting them.
He crawled. He sat up. He stood. He walked.
Best of all, he clearly recognized those closest to him, lighting up when his mom, dad, or siblings entered the room.
Take that, doc.
Mason is 10 years old now and while he continues to push past expectations, he still deals with a lot more than any 10-year-old should ever have to. He’s lost a considerable amount of hearing over the years and is now almost completely deaf.
And so far, he’s had 16 surgeries, three of those in the last year alone.
“This last surgery was incredibly difficult,” Amber told us, tearfully. “He had bladder surgery which led to sepsis. There is so much pressure in his bladder that it affects his kidneys, so we were trying to correct that.”
“Well, he’s been having a lot of worrisome symptoms and we just found out last week that the tissue around his bladder developed a blood clot and died. The surgeon had only seen that happen once in his 30-year career,” she said.
Now, Amber and the family face some impossible decisions. Schedule another surgery - his fourth since March - and risk more complications? Or delay the procedure and risk further damage to his kidneys? It’s something no parent should have to think about.
All the while, Mason presses on, doing all the things he loves like jumping on the trampoline, playing in the sprinklers, and spending as much time as he can in the water.
Amber is pretty special herself, a long-time Chiver who uses the site to clear her mind and decompress every single night. She’s also finishing first responder training as a paramedic, and that’s where Chive Charities, Amber, and Mason’s stories intersect.
“One day, I was sitting in class and our instructor, Tim, came walking in wearing a Chive t-shirt,” she told us. “I said, ‘Hang on, are you a Chiver?’ He told me he was and asked if I had ever heard of Chive Charities.”
Not only had she heard of us, but Amber has read nearly every Chive Charities recipient story. (She’s also a huge fan of the Cat Saturday galleries, for the record).
“Still, in all those years, it never occurred to me to apply for Mason,” she said. “It just seemed like all the other families had a bigger need than ours.”
After talking with Tim, though, she started to rethink that decision and decided to reach out about some needs that had popped up for Mason.
The family recently relocated from Burlington, Vermont to a smaller town about an hour away. While it was the best move for the family, their backyard isn’t fenced and is missing one thing that could really help Mason.
This water-loving boy gets some therapeutic benefits from swimming, including more strength and mobility. And while he’s 10 years old, he still struggles with febrile seizures, which are typically triggered by heat and humidity. A pool would really help him control those symptoms and improve his quality of life.
So Amber did what she thought she never would - she took Tim’s advice and applied for a Chive Charities grant to make their home safer for Mason and to get him the swimming pool he needs for continued health and wellness...and fun, of course.
Chivers helping Chivers is what it’s all about, and our donors came together to support one of their own, purchasing a new above-ground pool for Mason and fencing in the yard. The total impact was $13,399.
“The best thing about this community rallying around us is that there are so many people who don’t - who can’t - understand the struggle of raising a child with special needs,” she said. “But there are so many people who want to be there for those of us facing that very thing.”
Amber knows there’s a long road ahead for Mason, full of uncertainty. But the generosity of donors like you takes some of that pressure off and allows Mason to just be a kid again for a little while. He’s earned every second of it.
The Chive Nation community is truly one of a kind. There’s none other like it, and the support of this family is just additional proof of that. Those donations - from $5 per month and above - are pooled together to impact the veteran, first responder, and rare medical individuals we serve.
Right now, someone somewhere is scrolling through theCHIVE app, reading these amazing stories, and thinking, “What if I applied?” When they take that step forward - just like Amber did - we can answer with a life-changing grant. That’s only possible because of your support.
So if you’re scrolling through theCHIVE app, reading these amazing stories, and thinking, “What if I donated?”, we can answer by telling you that it’ll directly impact people in need. And some of them are even the fellow Chivers among us. It doesn’t get much better than that. DONATE HERE.