But there’s always good amongst the bad. The double-edged sword that demonstrates light in the darkness - if you can only pause to see it. And sometimes, that thing that changed your life in a way you never saw coming...in a way that dropped you to your knees...well, that very thing can become your whole world.
Katie Young has seen the good with the bad.
While she was pregnant with her first child - a girl - she learned that her baby had cardiomyopathy, a disease that makes it difficult for the heart to pump blood to the rest of the body. When her daughter Kori was born, she went into cardiac arrest and had to be intubated.
It wasn’t anything close to what Katie had expected with her first child, but after a weeklong NICU stay, things seemed to settle down and the family eased into a routine with their new baby.
Over the next couple years, Katie noticed some developmental delay and mobility challenges with Kori, so they proceeded with some diagnostics.
She had just delivered her second child, a little boy named Jaylen, when they got the results back from Kori’s testing.
“They told us that Kori had an extremely rare disease called Free Siliac Acid Storage Disease (also referred to as Salla Disease). There are only about 200 cases reported worldwide,” Katie explained.
The birth of a baby and the start of a rare disease journey, all in one week. Another double-edged sword.
The same night Kori was diagnosed, Katie received a call from the president of the Salla Disease organization, an incredible woman named Jessica Foglio. “She just sat on the phone with me and we cried together,” Katie said.
Salla Disease is an inherited condition that leads to progressive neurological damage. Symptoms include developmental delay, low muscle tone, abnormal movements, and seizures - and it’s a life-limiting disorder.
Katie and her husband Brevin took all of this information, looked at their daughter and newborn son and thought, “We can do this. One day at a time.”
And once again, life threw them a curveball.
“At around four months, our son Jaylen started showing similar delays as Kori,” said Katie.
Not long after, he would also be diagnosed with Salla Disease.
It would be easy to get caught up in the bad, for Katie and Brevin to withdraw and sit with the weight of it all. But they don’t just have two kids with a rare disease. They have a daughter who loves swimming and watching the ballerina movie, Leap.
They have a son who always wants to cuddle and who could sit and watch Scooby-Doo for hours if they’d let him.
We meet parents all the time who wish their child didn’t have a rare disease. But would they change them for anything in the world? Not a chance. That’s a double-edged sword.
Today, Kori and Jaylen require the use of a wheelchair full-time. Both will form epilepsy at some point, too; Kori’s seizures started last year and her personality has changed a bit since then. (“That’s been incredibly hard to see,” Katie told us).
And right now, the family must travel from their home to Dallas, Texas for nearly all of their major medical appointments and procedures, a drive that takes five hours on a good day. Factor in two wheelchairs, medical equipment, and the typical things that kids need for a day-trip, and you have one stuffed vehicle - if it fits at all.
So, when Kori and Jaylen’s neurologist told Katie about Chive Charities and how we help rare medical families just like them, she didn’t hesitate to reach out and apply for a wheelchair-accessible van that could accommodate both kids.
“I am so excited to be able to travel stress-free and comfortably with this new van,” she said. “We’re looking to add a service dog to the family next fall (the dog will help detect seizure activity for both Kori and Jaylen), so having more room is critical for us.”
Where else do you go for a van that can fit two wheelchairs and a service dog? That has Chive Charities written all over it. That big need came with a big ask, and our donors stepped up in a huge way to help purchase this family a new 2017 Ford Transit Passenger van from our partners at AMS Vans for a total impact of $52,973.
This family has seen a lot of good and a lot of bad. They deserve a lot more of the good. “It’s really inspiring and really humbling that people are willing to help those in need,” said Katie. “We’re so grateful and just love the concept of paying it forward.”
Just like the families and individuals we meet, we wish they didn’t have to deal with rare medical diagnoses, tragic accidents, or post-traumatic stress. But we’re also thankful to the donors who selflessly give so that we can be there for them when they need it the most. It’s our own version of a double-edged sword.
Would we change that for the world? Not a chance.
In life, there’s always going to be good amongst the bad. Become a monthly subscriber and help us do more of the good. DONATE HERE.