Everything was looking good. The baby was developing normally, Hope was feeling as good as expected, and the pair were excited about their future. Dalton was even able to convince the recruiter to postpone his start date a bit so he wouldn’t miss the baby’s birth.
On a warm and sunny day in August 2017, their son, Malachi, entered the world. All was right. All was well.
Until it wasn’t.
“At nine days old, we noticed Malachi making a weird arm movement,” Hope told us. “I just had a feeling it was something…else.”
That jerking motion turned into seizures, and while Hope was struggling to understand what was happening to her baby, Dalton had to leave for basic training.
“It was horrible, but we didn’t have a choice,” he said. “I had to go.”
Dalton and Malachi were both starting a different journey and neither knew what awaited them.
For the next few weeks - then months - Malachi continued to decline. By the time he was three months old, he was having hundreds of seizures daily, and failed many seizure medications. That was really unusual for seizure treatment and a red flag to the medical team. Nothing was working.
Doctors told Hope that Malachi was having focal seizures, infantile spasms, and subclinical seizures. He lost all developmental progress and any developmental milestones he had gained, and could no longer suck a bottle (“I had to feed him formula with a syringe just to keep him nourished,” Hope told us).
All the while, she’s completely alone. All the while, Dalton is in the midst of training and almost completely in the dark on his son’s condition.
“Everyone else was getting letters that were funny or entertaining,” he said. “And the letters I got from Hope told me that Malachi was declining.”
“I realized pretty quickly that I couldn’t keep working with our son’s medical needs - we were going to lose my income,” Hope told us. So she did what she had to do. She quit her job, sold their home, and moved in with her parents while Dalton was gone.
But still, while life continued dealing them an unfair hand, these three wouldn’t quit. They fought to keep going, to keep moving forward.
For the first year of Malachi’s life, he was in the hospital every single month. 12 months. 12 hospital stays. But like Dalton told us, “We’re the perfect people for the job. We won’t quit. We won’t accept failure. We’ll do whatever it takes for our son.”
(The night after Dalton completed his basic training, he was sleeping on the floor of the ER. That should give a glimpse into what they were shouldering as a family.)
Dalton and Hope were thankful to get their top choice for a duty station: the Houston/Galveston area and the next-level care they needed for Malachi at Texas Children’s Hospital. This was another serendipitous moment for their family.
Malachi would eventually be diagnosed with a rare genetic condition called STXBP1. At the time, he was one of about 400 known cases in the world - the first of which had been diagnosed just 10 years earlier…at Texas Children’s Hospital.
There’s a wide range on the spectrum of diagnosees. More than 80% have seizures and all of them are resistant to anti-seizure medication. All are non-verbal and 100% dependent on their caregivers.
But while the world has been unforgiving, while Malachi faces unimaginable challenges, he’s a fighter. He doesn’t quit.
“He’s the purest form of joy you’ll ever see,” Dalton told us, his voice cracking. “The world is not designed for him, but he always finds something to smile about.”
One thing that brings a smile to his face pretty consistently is his cape from TinySuperheroes, a non-profit organization that sends monogrammed capes to kids along with monthly “missions.” So one month, Malachi sent a note of encouragement to someone in the mail, completing his mission and getting a patch for his cape. Malachi wears his cape everywhere…as he should.
(And by the way, Dalton took it a step further and created a group for other dads of kids with special needs).
It’s been a lot for this family, but they don’t just sit back and feel bad about it. They’re always looking for ways to support their son. “My own dad always told us, ‘Life is all about effort. And when you really care about something, it causes movement.’” And man, do they care about Malachi.
While he won’t turn five until August, Malachi is, well…huge. He weighs almost 50lbs. “Lifting him is awful,” Hope laughed. They have reliable transportation for him, but they couldn’t keep safely lifting him into the vehicle. Especially because Dalton is gone for long hours and most of that work falls on Hope.
So Chive Charities and our donors stepped in to cover the full cost of a car seat lift for $11,994.
Malachi also loves spending time outside and being in the sunshine, so we turned to our donor family again and asked for their help in funding an adaptive swing set ($2,376) and special needs seat/toy for Malachi called a p-pod ($1,314). The grand total for everything Malachi needed was $15,685.
And we’re sure the kid who always finds something to smile about will be spending even more time grinning from ear-to-ear thanks to you and your support.
The world is unforgiving. That’s felt even more relevant this year and in the lives of some of the incredible recipients we’ve introduced you to since January. First Kinley, then Liam, Riley, and Simon, another amazing fighter that John Resig introduced this week.
We’ve seen a lot already in just a few months. But like them, we’re fighters, too. If the world still isn’t designed for them, we’ll try to give them aspects of a world that is. And by continually supporting those who need it most when they need it most, we’ll never lose. Join the fight and DONATE HERE.