At an early ultrasound, doctors detected some abnormalities in Christopher’s development. It seemed like his limbs would be most affected, but it was hard to say for sure.
“‘Your baby has a very rare bone abnormality, and it has affected three of the four limbs. Unfortunately, there is no known cause. It’s just random.’ This (along with a million other things) is what the doctor told us at our 20-week anatomy scan,” Candace shared.
The medical jargon is complex. Christopher was diagnosed with proximal femoral deficiency of the right lower extremity, and bilateral congenital amputation of the upper extremity.
In layman’s terms: he was born with limb differences affecting both arms and one leg.
“Honestly, once he was born and we laid eyes on him, we felt relieved just seeing him,” Candace told us. “The weeks leading up to his birth had been full of questions, but now here he was, and we could see him with our own eyes.”
At six weeks old, he was also diagnosed with a rare genetic skin disorder called Incontinentia pigmenti and partial blindness. At two years old, Candace and Chad were told he had Autism, too.
“It was tough after he was born because I realized there was a big change going from protecting him in utero to having him out in the world,” said Candace. “I just wanted to keep him safe.”
“As his parents, one of the most powerful experiences in life has been the ability to feel such intense fear for our child’s life and his ability to thrive in a world that is not made for him,” she continued.
But if two people could be positioned to navigate the complexities of having a child with special needs, Candace and Chad would be near the top of that list.
Candace works for an incredible organization called The Bee Community, which provides a place of belonging and meaningful work for adults with disabilities. And Chad is an Instructional Associate Professor in the field of youth development at Texas A&M University and is the Camp Director at Camp Millican.
“Having Christopher changed how I approached preparing for class,” Chad explained. “I started thinking more about accommodations and course materials and just looking at it all through a different lens.”
When Christopher’s little sister Juliette came along not long after, she also brought a new perspective to the family. Though they’re still really young - Christopher will be 4 in November and Juliette will be 2 ½ - they’re already forming a pretty incredible bond.
“Her maturity has been remarkable,” they told us. “She’s just so sweet, nurturing, and caring. We heard this amazing quote from a sibling's perspective of someone with a disability, and it really struck us. It said, ‘She got to know her brother before the world told him who he was.’”
That doesn’t mean it’s been a cakewalk – far from it. It’s just a matter of perspective.
They’ve gotten to the place where letting Christopher flourish and develop in the way he’s intended to is a relief. They don’t want to put a lot of pressure on him, or themselves, to hit milestones at certain times. They know he’ll do what he wants to do when he wants to do it, and they’ve gotten comfortable with letting him set the pace.
“Milestones can be a difficult word when you’re the parent of a child with a disability,” Candace said. “And it’s hard when you have friends whose family dynamic is a little different. But Christopher is the only Christopher. We just have to trust.”
He is the only Christopher, and despite his unique needs, he’s an energetic and curious child who loves to explore the world around him. Due to his autism diagnosis, he also has challenges with spoken language, though he absolutely finds ways to communicate his needs.
Because Christopher is so special, it seems fitting that his first sentence, which he spoke about two weeks ago, was simple and powerful. He said, “I see you.” We see you, too, buddy!
As he’s grown older, his inability to play outside like other children his age has been limited because of his mobility. Candace and Chad wanted to change that.
Chad is an athletic guy who loves running and being active outdoors. That fits in perfectly with Christopher, who wants to go along.
When the family started researching adaptive strollers and bikes, they were hit with some pretty serious sticker shock. Equipment of that type can range anywhere from a few thousand dollars to $10,000 and above, which was a lot more than they could cover on their own.
They launched an online fundraiser to friends and family, hoping to help defray some of the cost, and were thrilled to raise about $4,000. But that still left them nearly $10,000 away from the total cost.
So, when a family friend who also has a child with a disability told them about Chive Charities, they reached out to see if we could help cover the difference. They didn’t know that filling the gap happens to be our specialty.
Through your generous contributions, we were able to cover the remaining cost of an exceptional adaptive jogging stroller called a JOSI. The total impact was $10,168.
It would be an understatement to say they’re excited about the opportunities this will open for them. Chad said they long admired Dick and Rick Hoyt, the father-son duo who warmed so many hearts during their athletic escapades.
The Hoyts competed together in various athletic events, including over 30 editions of the Boston Marathon and Ironman Triathlons. Rick had cerebral palsy, and his dad would pull him in a special boat as they would swim, carry him in a special seat on the front of a bicycle, and push him in a custom wheelchair as they ran.
Team Hoyt, as they were known, were inducted into the Ironman Hall of Fame and were recipients of ESPN’s Jimmy V Award. Sadly, both father and son have now passed, leaving behind an enduring legacy.
Right now, Chad and Candace aren’t focused on Christopher’s legacy (as we said, he’s working on that himself), but they are focused on helping him do more of the things he loves. Thanks to your donations, more of that is possible.
We can’t wait to share more updates with you as these two hit the road and blaze their own trail. And for Christopher, who’s taking on every challenge thrown his way, we’ll pause for a moment, celebrate right along with him, and think, “We see you.”
So many of you reading this support our mission to make the world 10% happier with grants like this one. We never take for granted our ability to fill the gaps and support more Veterans, first responders, military families, and rare medical individuals like Christopher. That’s all because of you.
It’s tough to thrive in a world that’s not built for him, but gifts like this one are opening up more possibilities for Christopher. Give him a chance, and he’ll show you what he can do.
Regardless of where life takes him, he’ll have a community of ardent supporters right behind him, rooting him on. To everyone who’s donated - past, present, future - we see you, too. Join us and DONATE HERE.