It’s unimaginable to grieve the loss of a child, a nightmare no parent should be forced to endure. We can all agree on that. But what about the parents that grieve the life they
pictured for their child? What about the parents envisioning soccer games and backyard tag, long bike rides through the neighborhood, and Friday night football games under stadium lights?
What about the parents imagining a child with no hospital stays or medical equipment, no testing or procedures, no list of specialists or recurring appointments. What about parents like Brooke and Ross Amos?
“When you’re preparing to welcome a sweet new baby you have so many ideas and thoughts of how things will be. ‘Will they play football or baseball? Will they run track or be in the band?’” Brooke told us.
“You never wonder if they will need a wheelchair or a device that speaks for them. You dream about taking them to find the perfect bat bag or cleats. You don’t think about having to find a neurologist, a geneticist, a pediatric orthopedist, or all of the other specialists that your child might need. And when it comes down to hearing those words – the diagnosis that confirms your child is different or has special needs – with those words comes the weight of the world.”
But first came the light of their world.
Just after Valentine’s Day in 2012, Reese was born a happy and healthy baby and the family was thrilled with this sweet and smiley boy. For the first year of his life, he did just about everything his parents thought he would do. He giggled and clapped, crawled and stood up, walked, and babbled. Sure, he was a bit delayed on hitting his milestones, but he hit them – on his own time, in his own way.
It wasn’t until Reese turned 3 years old that Brooke and Ross began to feel concerned. Their son still wasn’t speaking in full sentences and was having trouble with his fine and gross motor skills. Not long after, the family switched pediatricians and all were in agreement that there was an underlying issue at play other than developmental delays.
The first feelings of doubt began to creep into the edges of Brooke and Ross’s minds. What did the future hold for their child? And was it the same future they had hoped it would be?
Over the next few years, Reese underwent multiple genetic panels and testing, all of which came back negative or inconclusive. They were looking for answers to questions they didn’t want to ask and still coming back empty.
“After a year on the waitlist, we received an appointment at the Sparks Clinic at the University of Alabama,” Brooke recalled. “He was tested for many things and was diagnosed with Expressive and Receptive Language Disorder, Intellectual Disability, and Developmental Coordination Disorder. And even though we were expecting it, as his parents, hearing that he had an intellectual disability was so hard,” she said.
Soccer games and backyard tag.
Long bike rides through the neighborhood.
Friday night football games under stadium lights.
It all might look different for Reese now.
But, as the incredible parents they are, Brooke and Ross let themselves feel every emotion, picked themselves back up, and used that feeling of helplessness to drive them to do more – to make the best out of the situation they were given.
Was it easy? Not for a second. But was Reese worth it? Every single time.
This is a boy who loves all things music. He “plays” the guitar, piano, drums, tambourine, you name it. He can’t even listen to music without tapping his foot, nodding his head, or singing along if he knows the words. He’s a huge fan of gospel music, but also loves Willie Nelson and Johnny Cash (good taste, right?)
He has a huge, bubbly personality and an effervescence about him that’s hard to forget. This boy who’s been through more challenges than most of us will ever face – at only 9 years old – can win over a stranger faster than you can say, “On the road again.”
It might not be the soccer games and backyard tag they imagined, but Reese’s life is full of happiness and laughter and joy. He’s still taking those long bike rides through the neighborhood…they’re just done with an adaptive tricycle instead.
That’s not to say it’s been a walk in the park. Far from it, actually. The chaos that was 2020 hit the Amos family hard, too.
His dad, a volunteer firefighter and EMT, lost his job with Goodyear Tire & Rubber after the plant permanently closed in May of last year. During this same time, Reese’s health was steadily declining and he began having daily seizures, extreme Nystagmus (a vision condition in which the eyes make repetitive, uncontrolled movements) and worsening gross motor skills and cognitive abilities.
Just like before, his genetic testing came back negative. Finally, Reese’s doctor was able to enroll Reese in a research program that sequenced his whole genome for free. It was huge…like more than $8,000 in savings huge.
A few agonizing weeks went by while the family waited for the results until, finally, a 9-year-long question was answered last summer.
Reese has a missing variance in the DLG4 gene. There are currently on 45 known cases worldwide, and only four (including Reese) here in the U.S. The disease is so rare, it doesn’t even have a name yet.
While the family is grateful for a diagnosis, handling the challenges in the here and now have been hard.
“Even though we had known for awhile that we would eventually need a wheelchair-accessible van, we were absolutely blown away by the cost,” Brooke told us.
Thankfully, they were referred to Chive Charities and Brooke immediately resumed her research mode to find out what they needed to do to get Reese his van.
And as anyone in the Chive community knows, all they needed to do was ask for help and, here, they would find it. When Brooke, Ross, Reese, and his big brother Parker reached out to Chive Charities, our donors responded with a life-changing grant. A few weeks ago, Reese squealed with laughter and excitement as a new 2019 Dodge Grand Caravan SXT pulled into his driveway and parked in its new home for a total impact of
Brace yourself for the actual reaction shots:
“When I received the email that Reese had been chosen to receive a wheelchair-accessible van from Chive Charities, I could not believe it,” Brooke explained. “I screamed and woke Ross up and he thought something was wrong. There are no words that we can find to express our gratitude and thankfulness for the Chive community. You have literally changed our lives. We can’t wait to become Chive members so that we can play a part in changing someone else’s life!”
(Of course they’re already thinking about how to pay it forward. They’re too good.)
Is this the life they imagined for Reese? No, it isn’t. It certainly looks a little different than the one they first pictured. But even they couldn’t have imagined what a joy it would be to raise him, what a privilege it would be to know him.
Week after week, we meet individuals and families who are grappling with their own loss. Sometimes, it’s a loss of mobility, or transportation, or freedom. Sometimes, it’s a loss of the future they imagined. Yet, because of our committed donors, these rare medical, veteran, and first responder recipients can imagine what it would be like to turn away from another closed door and instead, be greeted by wide open possibility.
Our donors made that possible more than 60 times last year, changing countless lives in the process. Imagine what we could do with your help, too. Become a monthly member and DONATE HERE.
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