Hi, I’m Jordan Ashworth, mom to Olivia (22 months) and Ellie (5 months), and wife to Greg Ashworth. We live in Freeland, Washington, and are one of the only families in the country with a newly documented mutation linked to Malignant Hyperthermia Susceptibility (MHS) — a life-threatening condition most doctors have never seen firsthand and some have never even heard of. How did we get so lucky? ♀️.
This fundraiser will help us:
• Attend the RYR1 Foundation Conference in Pittsburgh, PA in July
• Pay for lifesaving medical gear, therapies, medication, and travel
• Spread awareness of MH triggers outside anesthesia, which continue to be dangerously overlooked
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⚠️ What Is Malignant Hyperthermia?
Malignant Hyperthermia (MH) is a rare and deadly genetic condition triggered not just by anesthesia, but also by fever, illness, exercise, overheating, and even some common medications like statins. It affects how the body’s muscles regulate calcium, and in a crisis, the body can enter rapid muscle breakdown, fever, organ failure, and death.
From the start of an MH episode, there is a 10-minute window to administer dantrolene — the only known treatment — before the risk of death rises dramatically. Body temperature can spike from normal to cooking your own brain cells from the inside out in minutes.
“If appropriate emergency therapy is not administered rapidly, the mortality rate is extremely high.” – Malignant Hyperthermia Association of the U.S. (MHAUS)
Source
Yet most doctors and ERs still believe anesthesia is the only danger. The thing is, one of the medications called succinylcholine is used on paramedic-based ambulances. So visual awareness is key.
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Why Our Family Is So Unique
In 2007, I experienced an abnormal post-surgical reaction. It wasn’t labeled an emergency at the time, but it left lingering concerns. In January 2024, I underwent the Caffeine-Halothane Contracture Test (CHCT) — a test that requires immediate testing of live muscle tissue. Greg and I had to travel across the country to access one of the only civilian testing centers available with our then almost 5-month-old Olivia.
I tested positive for MH, but the genetic variant we found in me had never before been documented in medical literature. Since then, we’ve confirmed:
• Both our daughters, Olivia and Ellie, carry the same gene variant
• So does my sister, but thankfully not our niece, even though we have precautions for her just to be safe
• We believe it’s on our maternal line
• Our family may end up being enrolled in ongoing clinical research to better understand this variant and its possible link to RYR1-related myopathies (a group of muscle diseases with overlapping symptoms) or other helpful things, but to be determined still
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Olivia’s Complex Needs
In addition to MH susceptibility, Olivia has recently been diagnosed with:
• Hypermobility Spectrum Disorder (joints move beyond normal range, leading to fatigue and pain)
• Hypotonia, or low muscle tone — which makes it harder for her to balance, climb, and build strength (for suspected but unconfirmed reasons)
• Feeding challenges and sensory issues, possibly ARFID-related
• Poor proprioception and coordination, which can contribute to delays and falls
Hypotonia is often a sign of RYR1-related congenital myopathies, and we are beginning the process to explore this further. These conditions often require regular physical and occupational therapy (off-island), and supportive gear like braces and stabilizing wear.
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What We’re Hoping to Cover With Your Help
Here are just some of the things we are working to afford:
RYR1 Foundation Conference Travel, Lodging, conference fee for Jordan & friend to help with the girls so Jordan can soak in information.
This is to help us understand current safety protocols, participate in research, and connect with experts and families like ours.
Custom Foot/Ankle Braces for Olivia
To support her hypotonia and hypermobility as she learns to balance and walk more safely.
Body Braid Postural Support Garments
For Olivia and me — these soft, wearable supports help stabilize joints without restricting movement. We’re trying to fund a custom model for Olivia that can grow with her until she could wear their small size as no pediatric version is available.
️ Cooling Vests for Olivia, Ellie, Jordan
Because overheating is a dangerous and underestimated trigger, especially when playing, sick, or exercising. These vests are a proactive tool to help us keep safe year-round.
⚕️ Medical alert bracelets, custom seatbelt alerts to go near us with pockets for MH protocol, emergency hotline numbers, and help in a pocket on the inner seatbelt cover & also medic alert stickers for outside the car. That way, gosh forbid we are in an accident where no one can verbalize the alert, then it will be seen otherwise for Ellie, Olivia, and me for Jordan and Greg’s car regarding seatbelt alerts and window alert decals and seatbelt covers.
Ferry Travel and Out-of-Pocket Therapy Costs
We travel off-island to Seattle Children’s for Olivia’s PT, OT, and specialist visits for both girls as things come up, which adds up quickly between ferry fees, gas, parking, and time off work for Greg if he needs to be present.
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Why We’re Doing This
If you know Jordan, you know she’s been collecting bizarre medical conditions like rare Pokémon since the ’90s.
She’s basically the cryptid hunter of weird diagnoses.
It started around age 7 and apparently the universe said,
“Why stop now when you could level up and pass it to your kids?”
Cool cool cool.
So now, we’re unlocking ultra-rare gene mutations (that didn’t come with any cool spider senses, wings, or teleportation features), but instead chasing diagnoses no one’s heard of, and basically living in a never-ending episode of Medical Mystery Hunters: Family Edition™.
Yes, it’s overwhelming. Yes, it’s expensive. And yes, we laugh so we don’t lose our minds.
Thanks for being here, for loving us, and for helping us keep this quirky little family safe.
We as parents want our girls to grow up strong, safe, and never limited by their diagnosis. But we also want them alive. There’s so little known about this condition — especially in kids, and especially with undocumented gene mutations — that the burden of safety and advocacy falls squarely on us. We want to be informed, prepared, and proactive.
If you can help, whether through a donation or by sharing our story, it means the world. You’re not just helping us — you’re helping bring awareness to a condition most families don’t know exists… until it’s too late.
With love and deep gratitude,
Jordan, Greg, Olivia & Ellie Ashworth
