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Crystal K.

There were signs.

Throughout Crystal’s life, there have been signs. It’s just that she wasn’t always aware of what she was seeing and how it would impact her in the moment. The revelations came later.

It was like the year she worked at Camp Lejeune and started noticing that many of the Marine trucks had KCCO on them. She didn’t know what it meant until she came across the bigger community on Facebook and got introduced to some chat groups. Keep Calm and Chive On.

Then, though she’s a self-described introvert, Crystal decided to join the Greenville Area Chivers, began doing RAKs and became a Chive Charities donor.

One day, the chapter admin invited her to a birthday party he was hosting in his garage. It was June 2014, and while she strongly considered not attending (see above re: introvert status), she changed her mind and decided to go. That night, she met her future husband.

Two months later, Crystal completed the ice bucket challenge, benefiting the ALS Association.

She didn’t really know much about ALS at the time, but that was kind of the point. It was all about raising awareness, which she was glad to do. After, as life tends to do, things just kept moving along. 

Crystal got a job she loved working as the Director of Human Resources at the YMCA of Greenville. She and her husband Will welcomed a son named Emmerich (he’s six years old now) and got married on February 3, 2023 at 2:30pm. They’re numbers people; it made sense.

Life wasn’t without its challenges, but they found a way to persevere through everything handed their way. In 2016, Will was diagnosed with Multiple Sclerosis (MS). That’s why when Crystal started noticing she was tripping over her feet, the pair started to wonder if she had the same thing. 

“It was the fall of 2021,” she told us. “And I just kept tripping over one of my feet. Towards the end of that year, it became harder to stand from sitting, my balance was off, and I had some difficulties with grip and dexterity in my hands.”

Crystal decided to try the functional medical approach so she wasn’t solely treating her symptoms. She was told it could be gluten/celiac-related, so she went on a strict diet. 

“But I still had symptoms,” she said.

It got bad enough that Crystal went to her primary care physician, who ordered an MRI. The results came back as unremarkable, non-conclusive. 

At that point, it was August 2022, and Crystal had seen no improvement. She was referred to a neurologist who suspected she had a motor neuron disease. She went to another specialist and got blood work done. 

Four med students and an EMG test later, Crystal had her answer. She was officially diagnosed with Amyotrophic Lateral Sclerosis (ALS), commonly known as Lou Gherig’s disease.

“In August of 2014, while wearing one of my many KCCO shirts, I participated in the ice bucket challenge, benefiting the ALS Association,” she said. “Fast forward eight years to August 2022, and I was diagnosed with ALS. Like the ice water hitting me and freezing me in my tracks, so did the news of this diagnosis. Very quickly, the life I had known changed.”

Crystal described it as a rollercoaster. She has ups and downs, good days and bad days. “At first, it’s devastating,” she explained. “But once that wears off a little, you just tackle each day as it comes. This is my new normal – and I’ve noticed it brought our family closer together.”

Once, her husband Will asked her how she was able to stay so positive all the time. Her response: “I don’t know. I just f-ing do it.”

After she came to terms with what she was facing, Crystal sat down to share her story on Facebook. One of her former co-workers from Camp Lejeune was reading through Facebook and came across it. She noticed that a lot of her new symptoms seemed to mirror what Crystal had experienced, so she reached out to ask some questions.

“That friend was diagnosed with ALS at the end of 2022, not long after I had gotten my own news,” Crystal said. “Unfortunately, she passed away in April of this year.”

It’s the tough reality for those battling such a horrible disease, but one that Crystal hopes is a long way off. She’s on two meds for ALS that cost over $100,000 each year. Each.

While Medicare covers some of the cost, Crystal was still left with $2-$3k in out of pocket expenses each month. Thankfully, she found an organization through an ALS support group on Facebook that helps offset that cost, too. 

Crystal is also part of a clinical trial for a new drug, and switched to the real medication this month. (During the trial, some participants receive a placebo.) It’s one of the first to target a certain protein shown to be part of ALS, and doctors are very excited about its possibility. So is Crystal.

Still, even with some help here and there, Crystal, Will, and their young son, Emmerich, have a lot on their plates. With Will’s MS and Crystal’s mobility decline, they quickly realized they would need a home modification.

They live in a generational home, the third family in Will’s lineage to reside there, and the home and property mean a lot to them. They were able to raise some funds through their friends and family, grants, and a refinanced home equity loan to pull it off. It finished up right around Halloween and gave them some much-needed relief.

But one other major question mark still loomed. 

This year, Emmerich wrote a letter to Santa Claus. In it, he asked for one thing: a wheelchair-accessible van.

We can’t say, officially, that Santa shared that letter with us, but we can say, officially, that we got the request. 

Through the support of Chivers like you supporting Chivers like Crystal and Will, we were able to fully fund the cost of a 2021 Chrysler Voyager, perfectly suited to fit their needs. The total impact was $50,000.

“We are so excited about this van,” Crystal said. “It will give me more independence and allow me to do more with my son. It got here in time for Christmas, and when it pulled into the driveway, Emmerich said, ‘Can we keep it forever?!’

“When I told him that we can, he was even more excited and yelled, ‘YES!’ He even asked if he can drive it when he has a wife (lol) and if we coud pick him up from school in it.

“The amount of freedom it’s going to provide is remarkable. I won’t have to miss out on things because of not being able to get to a car. You have no idea how much it means to me that I can continue to cherish moments with my son and husband and family.

“This last year has come with a lot of challenges and hurdles to overcome. I’ve gone from being independent to having to rely on my husband and mom to help me with a lot of things. ALS has affected my ability to walk, use my hands, and my speech has changed. Even with all of these challenges, I find the positive in each day I still have, which is my family and friends. 

“Don’t get me wrong, she continued. “I have bad days, but I don’t dwell on the negative because it does nothing for my health and well-being, or the others around me. 

“You think having a terminal illness would create a lot of stress, but this past year I think I have laughed more and stressed less than I have in a long time. 

“Thanks again for all you do! Being a Chiver, Chive Charities has always been something special to me, but now being a recipient, you all hold a special place in my heart.”

To each Chiver, RAK’er, reader, donor, and supporter, thank you for being there for those who need it most when they need it most. 

Never doubt what you can do. Never doubt the connections you’ve made, the community you’ve built, the lives you’ve changed by just showing up. 

You give so much without knowing if and when you’ll ever get anything back. Today, you lifted another huge burden and made a Christmas wish come true. Crystal never could have imagined that the support she gave would one day come back her way – but you can bet she was thankful to have it. 

Come be part of this movement with us, and let’s change more lives together. DONATE HERE.

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