But at four months old, a fever cast a shadow over their bliss, revealing the first hint of a deeper, unseen struggle within their daughter.

“We went home from the hospital and just started navigating our lives,” explained Vayda’s mom, Brittany. “As first-time parents, we were just smitten by her.”

“At about four months old, she developed a fever that we were a little concerned about, but it was also just our first fever as new parents. So you're kind of hyper-sensitive to what's going on. But I think as a mom, you just have a sixth sense that something else might be happening. 

“After about, I don't know, 15 hours of the fever, we tried to go to sleep, and when we woke up the next morning, Vayda's eyes were going in different directions. One was rolling one way, one was rolling the other. We knew that it was something pretty serious.”

Initially dismissed as a febrile seizure caused by a UTI, it soon became evident that something more serious was at play.

Despite the initial confusion and misdiagnosis, Vayda's parents navigated these challenging early months, chalking up the incident as a one-off. However, when Vayda experienced another fever at 10 months old, their worst fears began to unfold.

Over the course of several days, Vayda's condition deteriorated rapidly, leading to paralysis. After an extended hospital stay, multiple diagnoses were considered, including Guillain-Barré syndrome and even botulism, but none fit her symptoms perfectly.

“Typically, with Guillain-Barré, You start to go paralyzed from your feet up, and I know Vayda went paralyzed from her head down. And so after we challenged that diagnosis a little bit, they transported us to Utah.

“When we were in Utah, they had thrown a couple of different diagnoses at us. They thought it could be botulism, but botulism takes a really long time to get tests for. A small part of me hoped it was botulism just because there were answers that way.

“That test did come back negative. At that point, the geneticist came in and we did genetic testing. On June 29, 2023, my 35th birthday, we got a call from the geneticist that we had results and they diagnosed her with a genetic condition called ATP1A3.

“We had our meeting with our neurologist the next day and they told us that they thought that Vayda had rapid-onset dystonia-parkinsonism (RDP).”

RDP is a rare, hereditary movement disorder that causes sudden onset of dystonia (a movement disorder that causes the muscles to contract) and parkinsonism (a brain condition that causes slowed movements, stiffness, and tremors.

As her symptoms evolved, it became clear that her condition was triggered by fevers, leading to paralysis and severe dystonia. Her parents discovered a support group for Alternating Hemiplegia of Childhood (AHC), which is linked to the ATP1A3 gene, and through this group, they learned about a neurologist in Chicago who had seen similar cases to what Vayda was experiencing.

There was just one problem – the cost of flights from the West Coast to Chicago, plus a hotel stay, rental car, and everything else that goes with a lengthy medical visit – was too exorbitant for the family to cover.

They applied for assistance from Chive Charities in the hopes that our donor community might be able to step in and fill the gaps where insurance and other resources could not. The total impact was $2,090.

And, as always, our supporters were there for them. 

The trip to Chicago, made possible by Chive Charities and an angel donor who donated hotel points, was a turning point. Dr. Silver, a renowned specialist, confirmed that Vayda's condition was fever-induced proximal weakness encephalopathy. This diagnosis, though daunting, provided clarity and a path forward. Dr. Silver’s expertise and dedication offered a glimmer of hope, and Vayda was enrolled in a study at Northwestern University aimed at developing genetic therapies.

“Over the course of waiting to get that appointment, I found two other people that have this condition,” shared Brittany. “One is a mother in Boston who I've spoken to regarding her daughter. And the other is a 23-year-old in Southern California who just found out she had this condition at age 22 when she got mono and lost the ability to use her arms, swallow, and speak.

“And so it felt a little less isolating knowing that there are other people out there and doctors who have seen this. Because of you guys, we were able to make that trip to Chicago happen in February.

“They're studying ATP1A3, which is all of the conditions, AHC, RDP, and fever-induced proximal weakness. They've been waiting patiently to find another candidate that has FIPW, fever-induced proximal weakness, so they could study it against another child who has that same condition.

“So we gave Vayda's blood, we were able to tour the lab and now they are working on studies for genetic therapies through that. And so it was really amazing to go there and learn that at least if my daughter has to have a genetic condition that is so rare, somebody's out there with their eyes on it researching.

“It was very emotional that we were finally able to meet a doctor who could tell us more than just, ‘Well, go home and good luck.’”

Since meeting Dr. Silver, Vayda has made remarkable progress. She has gradually weaned off several medications, which has significantly improved her quality of life. Her parents have witnessed small but significant milestones: Vayda's renewed interest in eating by mouth, the ability to sit unassisted for short periods, and her infectious laughter and joy that have remained undiminished despite her challenges.

She’s one of only four known cases in the United States with her specific condition. This ultra-rare diagnosis has connected her family with others facing similar challenges, creating a small but invaluable support network. The knowledge that they are not alone, combined with the specialized care from Dr. Silver, has transformed their outlook.

As Vayda approaches her third birthday, her resilience and bright spirit continue to inspire everyone around her. Despite the constant threat of setbacks with each fever, her family's determination and the support they have received keep them moving forward. The progress she has made is celebrated with gratitude and hope for what the future holds.

“Vayda is a ball of personality,” Brittany laughed. “The thing that has also gotten us through this is that her light has not dimmed through all of this. She's the happiest baby we know. She's not a baby anymore, but she's my baby forever.

“We use the smiley face as our symbol, and we've kind of coined it as our own on Vayda's voyage because she's always happy. She's so smiley. She loves to giggle. She loves her family. And just her happiness is incredible. I mean, if she was depressed through this, as depressed as I felt, it would make it so much harder. And she definitely has her hard days, you know, anytime she gets sick, she's weak. But that smile is what gets us through.”

Today, we’re smiling a little wider right along with her.

We ask our donors to help support the veterans, first responders, military families, and rare medical individuals like Vayda who we work tirelessly to serve. That support goes beyond financial contributions, like donating frequent flier miles or hotel points. 

Your donations go a long way to broadly support our recipients, which you can celebrate by reading any one of the more than 600 recipient stories we’ve shared since 2012. But, if you or someone you know would like to be part of changing more lives through other donations like hotel or flight points, please reach out to our Chive Charities team at support@chivecharities.org.

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