He blinked confusedly a few times, a sense of fear slowly taking over his body. Jackson began to cry, standing from his desk and stumbling as he tried to walk to the front of the room where his teacher stood waiting. The details of what happened next are foggy, a combination of the medical trauma he was experiencing and memories that are simply hard to recall so many years later.
Eventually, a rushed trip to the emergency room and follow-up tests revealed the unthinkable. Jackson, a second-grader, had experienced a stroke.
“Even then, the doctor suspected it might be a rare disease,” said Jackson. “And I was mad because I had to miss recess.”
That first doctor’s suspicions were correct and Jackson was eventually diagnosed with a rare medical condition called Moyamoya disease, a progressive illness caused by blocked arteries at the base of the brain in an area called the basal ganglia.
The name “moyamoya” means “puff of smoke” in Japanese and aptly describes the look of the tangle of tiny vessels formed to compensate for the blockage.
The only available treatment option was surgery to try to fix it, and if he elected not to undergo the procedure, he would continue to have strokes or TIA’s (mini-strokes). Doctors said scans showed that Jackson had experienced two strokes already, and the blood vessels in the front of his brain were dangerously narrow - two major arteries leading to his brain were closed off completely.
When the family met with a neurologist, he told them Jackson’s was only the second case of Moyamoya the hospital had seen in nearly 20 years.
It was hard to believe that just a few weeks earlier, they had been deciding if he’d still play rec basketball or be allowed to ride his bike down the street by himself.
Now the decisions could cost him his motor function. His speech. His life. After a few sleepless nights, the final decision was made. Jackson was off to Massachusetts for surgery.
“We traveled to Boston Children’s Hospital for life-saving surgery by Dr. Scott and Dr. Smith,” he shared. “It’s tricky because they have to be precise with the blood flow. Too thin and I would bleed out. Too thick and I would clot. It was a delicate dance. When I woke up, I was so swollen and puffy, I couldn’t even see through the slits of my eyes.”
The surgery was over, but the journey was just getting underway. Due to the severe lack of blood flow and resulting strokes, Jackson had to relearn the basics of walking, running, writing and reading. “That took years,” he said.
In the short-term, it meant refining his fine and large motor skills, learning to grip a pencil again, coordinating his movements when using his arms and legs in sync (like riding a bike or swimming), and battling through neuro-fatigue.
In the long-term, it meant a new eyeglass prescription, zoning out at school, completing his work and then forgetting to turn it in, and generally trying to live with short-term memory deficits.
“By high school I was ‘functional’ but I had major struggles,” Jackson said. “It was a long road to finding the best accommodations so I could use my intelligence and not be held back by the effects of my rare disease.”
“I could do trigonometry, but couldn’t spell words, write out sentences, or remember people’s names. To this day, I use my cell phone to help me spell, remember small details, and even drive to school each day. Even though I live just 7 minutes away from the building, I have to use driving maps constantly.”
There’s more to Jackson than what meets the eye. On the outside, he looks like a typical teenager. On the inside, his entire world had been rocked.
Beyond his rare diagnosis, he’s far from an average teen. He’s quick to make friends, loves to read, and is especially interested in engineering. When he realized he needed some extra help, he asked his high school for resources and got support in the form of speech-to-text software on a laptop provided by the school district. He used that help (and his own grit and determination) to graduate with a high GPA and high ACT score. The results landed him a spot at Oklahoma Christian University this year. Oh, and the field of study? Mechanical engineering, of course.
Because Jackson is a high-achiever, he realized pretty quickly that he was going to need some assistance in his college classes, and there was no university-provided speech-to-text software available to him. He chose to do something about it.
He did a general internet search for help getting learning devices for patients with rare diseases and one name glowed brighter than the rest: Chive Charities.
At first glance, he saw service dogs, medical equipment, and wheelchair-accessible vans. But when it comes to our grant aid, there’s more than meets the eye, too.
For 10 years - and counting - Chive Charities and our donors have met the needs of Veterans, military families, first responders, and rare medical diagnosees all across the country, by providing everything from safe backyard fencing and adaptive bicycles to hyperbaric oxygen chambers and robotic therapy equipment. It’s incredible, it’s awe-inspiring, and it’s nowhere close to the end of what we can do.
Which brings us back to Jackson.
He has big plans. He just needed some extra help bringing them to life. That’s why we were thrilled to fund a new MacBook Pro laptop and Glean software - created specifically to help advance learning - to get Jackson’s college experience started on the right foot. The total impact was $2,833 and it was an easy yes because he’s incredible, awe-inspiring, and nowhere close to the end of what he can do.
You know, more often than not, when we share a recipient story with you, the need is usually pretty evident. You can see the challenges and maybe even the symptoms a little more visibly. That’s not the case with Jackson, and he often considers how much to share with people and when to share it. Does he explain that he didn’t forget your name because he didn’t care but because he struggles with short-term memory loss from his strokes? Does he tell you that he can write but the effort wipes him out for the day? How much does he tell? And when does he tell it?
It’s something he’ll likely weigh the cost benefit of for a while longer. But thanks to donors like you, keeping up in his college classes will be one less worry, one less thing to think about. Peace of mind is tough to find but worth its weight in gold. Let’s bring it to more recipients just like Jackson. Become part of our movement to make the world 10% happier and DONATE HERE.