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When Your Child's Diagnosis Becomes Your Calling

Jessica Cella's Fight for Adrenal Insufficiency Awareness

How one mother's determination to help her son led to saving lives across San Diego—and why small, local victories matter as much as Capitol Hill battles.

January 10th, 2019. That’s the date Jessica Cella’s life changed forever.

Her youngest son was diagnosed with primary adrenal insufficiency at Rady Children’s Hospital in San Diego. The diagnosis came with a sentence that would stay with her: “rare condition.” And then came the kicker that would fuel years of advocacy work: the hospital told her that if her son went into an adrenal crisis, San Diego Fire Rescue paramedics couldn’t give him the medication he needed. They didn’t carry it. Not a single ambulance in the city had it.

Jessica describes the feeling with a vivid metaphor: “I felt like my husband and I were standing on the island of Hawaii. There was nobody else coming. We were all alone.”

That moment, that isolation, that helplessness, didn’t break her. It mobilized her. Seven years later, Jessica was honored as the California Senate District 40 Woman of the Year for her work. But more importantly, she’s helped change the emergency medical landscape in San Diego in ways that are directly saving lives.

Her story is a masterclass in something we don’t talk about enough in advocacy: the power of starting small, thinking locally, and building genuine impact in your own community.

Understanding Adrenal Insufficiency (The Simple Version)

Jessica often tells people: “To manage it day to day, it’s very complex, but in an emergency situation, it’s very simple.”

Here’s the layman’s version: Your adrenal glands produce cortisol and aldosterone—hormones that help your body respond to stress. When you face something scary or stressful, your body has a “fight or flight” response. Cortisol helps you survive that stress.

People with primary adrenal insufficiency don’t have working adrenal glands. Their bodies can’t produce cortisol on their own. So they need to take steroids every day, three times daily in Jessica’s son’s case, to replicate what healthy adrenal glands do naturally.

But here’s where it gets dangerous: when stress hits, illness, injury, even the flu, their bodies can’t ramp up cortisol production like yours and mine can. That’s when you need an emergency injection of Solu-Cortef, a specialty steroid. Without it, an adrenal crisis can be life-threatening.

Jessica’s son carries this medication with him everywhere. But for years, if he’d gone into crisis in San Diego, the paramedics who arrived couldn’t administer it.

The Island of Isolation: Realizing You’re on Your Own

When Jessica left the hospital that January day, she faced a reality that every parent of a chronically ill child knows: the vast majority of your child’s care now falls on you.

At eight years old, her son needed her to be an expert on a condition she’d never heard of. She needed to know the signs and symptoms. She needed to manage his medications. She needed to always have Solu-Cortef injections ready—in the house, in the car, in emergency kits. She needed to understand what an adrenal crisis was and how to respond.

“That’s a lot of pressure on a family,” Jessica reflects. But that pressure also became her motivation.

The turning point came when she attended a conference with other adrenal insufficiency patients. She talked to about 200 people personally. What she learned was sobering: for most people, it took three to five years on average to get diagnosed with adrenal insufficiency. Many had received terrible care at hospitals or from endocrinologists. Horror stories vastly outnumbered success stories.

That’s when Jessica realized something crucial: they actually had a success story. They had gotten the right diagnosis, the right doctor, the right hospital. Many others hadn’t.

“I realized at that moment that we actually had a success story. Obviously as hard as it was that my son was diagnosed with a rare condition, we had a lot of things that went right,” she says. “And I think there’s a part of me that feels a little bit guilty about that, and I want to make sure that I lessen the burden on other caregivers.”

That guilt, that awareness of privilege in the midst of crisis, became the seed of her advocacy work.

Starting Small: Emergency Kits and Filling Local Gaps

Here’s what I love about Jessica’s approach to advocacy: she didn’t try to save the world. She identified a specific gap and filled it.

After her son’s first year of diagnosis, she noticed that many newly diagnosed patients didn’t know what an emergency kit should contain. They didn’t know where to get the supplies. Many struggled to get the needles they needed, and a Solu-Cortef injection without needles is useless.

“I can’t save the world. I can’t save everybody,” Jessica told herself. “But I’m going to carve out this little piece of a gap that I’ve identified that I think I can give back to the community in this small way.”

She started helping newly diagnosed families create emergency kits. She organized local meetups and roundtables. She connected patients and families. It wasn’t glamorous. It didn’t make headlines. But it saved lives.

Then she started getting messages from families years later: “Jessica, we still use the emergency kit you helped us create five years ago. Thank you so much.” Or: “My son went into an adrenal crisis and we were prepared because of you and because of the training that you’ve done.”

Those messages, that direct feedback from people whose lives she’d touched, became more powerful than any award.

“I think the smaller wins that keep us going are really at the patient grassroots level,” Jessica says. “Those little things when you hear from the community specifically, I think probably power me more so than standing on Capitol Hill advocating or getting Woman of the Year.”

This is crucial for anyone thinking about advocacy: you don’t need Capitol Hill to make a difference. Sometimes the most impactful work happens in your living room, at a local hospital, or in conversations with families who are where you once were.

The Paramedic Protocol Victory: Local Change That Saves Lives

Jessica’s biggest win, the one that earned her Woman of the Year recognition, shows what happens when you commit to a specific, achievable goal.

She identified a clear problem: San Diego Fire Rescue paramedics couldn’t administer the steroids that adrenal insufficiency patients need in an emergency. She partnered with six endocrinologists across the country and conducted training for 1,100 paramedics in San Diego on how to administer a “patient’s physician prescribed medication”.

Then came the real victory: she worked with San Diego County to develop a brand new protocol that allows paramedics to administer patient’s physician prescribed for children ages zero through 13. That protocol will go live on July 1st, 2026.

“Protocols are very hard to put into place,” Jessica notes. And she’s right, changing emergency medical protocols is bureaucratic, time-consuming, and requires sustained effort. But she did it. In her community. Where it matters most.

Think about what that means: a child with adrenal insufficiency who goes into crisis in San Diego now has paramedics trained to help them. A protocol is in place. Lives will be saved.

That’s not small. That’s transformational.

The Landscape Shift: Pharma Companies as Resources (Not Villains)

When Jessica’s son was first diagnosed in 2019, there was only one pharmaceutical company involved in the adrenal insufficiency space: Pfizer. Today, there are several, which means more treatment options for patients—and, importantly, more resources.

Jessica is thoughtful about this evolution. She welcomes pharmaceutical partnerships while being clear-eyed about what they are. “More therapies is always a good thing, always options for patients. And in addition to that, it can also be a resource for patients,” she explains.

The adrenal insufficiency nonprofit community is small. There are only about three nonprofits in the space, running on approximately $150,000 per year each (except for one larger organization). With such limited resources, partnerships with companies that can provide funding, education materials, and research support genuinely help.

“Resources are scarce,” Jessica acknowledges. “And so it’s really tough to move the needle when you don’t have a lot of those resources. And so I think that was when things shifted a little bit is when the pharmaceutical companies came into the picture and were able to help some of those nonprofits from a resource standpoint.”

This is a nuanced view of advocacy that doesn’t fit neatly into ideology. Yes, pharma companies have profit motives. But they also have resources that can genuinely help rare disease communities. The question isn’t whether to partner with them, but how to do so authentically and transparently.

The Personal Foundation: A Mother’s Determination Born From Her Own Scarcity

Near the end of our conversation, Jessica shares something deeply personal: she was raised by a single mother who struggled with drugs and alcohol. She grew up without resources. She didn’t have access to top hospitals or specialists.

“If I had adrenal insufficiency when I was younger, my mom didn’t have a college degree and she didn’t have the resources to send me to a Rady Children’s or have the top endocrinologist,” she reflects.

This history informs everything she does. She doesn’t advocate for her own son—he has resources, a supportive two-parent household, access to excellent care. She advocates for the children and families who don’t have that luxury.

“I always tell my son, I don’t actually advocate for my son,” Jessica says with clarity. “I advocate for children and families and patients who don’t have that luxury that my family has. And like I said, growing up that I didn’t have.”

This is the beating heart of authentic advocacy. It’s not guilt. It’s not charity. It’s recognition that some people have been handed advantages, and using those advantages to level the playing field for others.

The Magic Wand: A Vision for Emergency Response Across America

If Jessica could wave a magic wand, and this is her phrase, her “magic wand list,” what would she change?

She’d ensure that EMS agencies across the entire country have education and protocols for adrenal insufficiency. She’d make sure that paramedics at least know what the condition is and can respond appropriately. She’d eliminate the “transport only” agencies that currently just move patients to hospitals without being able to administer emergency medication.

“Unfortunately right now there’s a lot of areas that are transport only, and that’s how we’re losing patients is that they’re just being transported and they’re losing their life in transport,” she says.

The parallel to rural healthcare challenges is stark. In rural areas, where specialists are scarce and resources are limited, a child with adrenal insufficiency faces exponentially greater risk. Jessica knows this. She’s working on it. And she’s not waiting for the federal government to move. She’s doing it city by city, region by region.

The Real Power of Local Advocacy

What strikes me most about Jessica’s story is this: she’s accomplished something tangible in her community that many advocates spend years chasing at the federal level.

I made a powerful observation: “You talk about making change in your neighborhood, in the city and the county where you live. And I think that’s just so important for people to understand.”

There’s a Capitol Hill in almost every state. There’s a county health department in every county. There are school boards and city councils and hospital protocols. These institutions determine how care is delivered, how emergencies are handled, how patients are treated.

Jessica didn’t need to change federal law to save lives. She needed to train paramedics, develop protocols, educate hospitals, and connect families. She did that work. And it’s working.

“I can’t save the world, but I’m going to carve out this little piece,” she said. And then she did.

For anyone thinking about getting involved in advocacy, that’s the invitation: you don’t need a massive platform or unlimited resources. You need a problem you’ve identified, a community you care about, and the willingness to show up consistently.

How to Get Involved

If Jessica’s work resonates with you, here’s how you can learn more:

  • Connect with local adrenal insufficiency support communities and nonprofits

  • Reach out to your county or city health department about gaps in emergency preparedness

  • Talk to paramedics and emergency responders in your community about rare diseases and how to respond

  • If you or a loved one has adrenal insufficiency, consider mentoring newly diagnosed families—that personal connection is invaluable

  • Advocate locally for protocol changes and training initiatives that can save lives in your community

Final Thoughts

Jessica Cella’s story is a reminder that advocacy isn’t just about speaking at Congress or testifying before committees. It’s about identifying problems in your community and solving them. It’s about turning the isolation you felt into a bridge that helps others not feel alone.

Her son’s diagnosis was devastating. But Jessica transformed that devastation into something concrete: emergency kits that save lives, paramedics trained to respond, protocols in place, families supported.

That’s not small. That’s the entire point.

And it all started because one mother, standing alone on an island, decided she wouldn’t let other families feel that way.


Have your own story of local advocacy impact? Or are you thinking about getting involved in your community? Share in the comments—I’d love to hear from you.

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