In our house, 2016 will be the year of Showing Up for families just like ours.
A 2011 study estimates there are 32 million chronically ill kids in the United States, which means there are a lot of families like us, struggling with diagnoses and treatments for their little ones, trying to parent in the face of medical challenges.
In 2009, my daughter Cambria had an adrenal crash at home when she was only four months old. After 5 impossibly long days in our local children’s hospital, she was diagnosed with Adrenal Insufficiency (AI), a potentially deadly condition that results when the body is unable to produce enough cortisol and aldosterone.
Without these two hormones, the body struggles to regulate everything from blood pressure and blood glucose levels to the immune system, electrolytes, and bone health. In stressful situations (think a broken bone, stomach flu, or an emergency scenario), cortisol helps the body manage stress while keeping important functions operational. There are around 60 conditions that can cause AI, from the removal of a brain tumor to prolonged use of inhaled corticosteroids.
In an emergency, proper AI treatment is crucial – that means having immediate access to an emergency injection of Solu-Cortef to replace cortisol. We never leave the house without my daughter’s Go-Kit, an unbreakable case that carries her emergency injection and a syringe. Even though a vial of Solu-Cortef only costs around $8, the value of that injection cannot be measured. Why? In the case of an accident, this $8 vial will save our daughter’s life, stabilizing her until she can receive proper emergency treatment at a hospital.
Sadly, emergency workers in the United States are largely undereducated when it comes to the topic of AI. As I write this, no nationwide protocols exist for the administration of Solu-Cortef and the injection is not carried on ambulances. I have spent years working with the CARES Foundation toward the creation and implementation of treatment protocols, and while there has been some progress in regions of the US, it is not enough.
In the last several weeks, two children have passed away after failing to receive proper medical treatment for AI at their local emergency rooms, simply because the staff was not properly educated.
As a hyper organized Virgo, my 30+ years on this Earth are littered with resolutions, goal setting sheets, to-do lists, and detailed day planner pages. The thought of a brand new year excites me almost as much as Christmas does. While a New Year means a fresh start, for the last six years, there has always been a bittersweet line item on my goal list that carries over into my clean slate New Year.
Over the years, I have spent countless hours pursuing this elusive goal. I’ve traveled across the United States, I’ve met with the world’s top physicians, and I’ve lobbied lawmakers. There have been late nights, endless emails, and heaps of worry.
That line item that carries over every year? It keeps me up at night. It drives me. It literally forces me to focus on showing up every single day, even when the house is a wreck, my workload is insane, and I haven’t worked out in days.
That line item is protecting the lives of 600,000 Americans, including my six year old daughter, Cambria, by establishing nationwide protocols for the emergency treatment of Adrenal Insufficiency.
To cross this important line item off our list, we have to raise AI awareness and advocate for national emergency protocols that will potentially save the lives of 600,000 Americans diagnosed with AI, and over 2 million who have undiagnosed AI.
This year, our family is going all in and focusing on "Showing Up" and advocating for other families just like ours - families who are impacted by chronic illness and rare disease. Cambria is our little spokesgirl and she spearheading our efforts as a family this year to educate others about Adrenal Insufficiency.I think she's pretty terrific. Her years in and out of hospitals across the nation have made her an empathetic young lady, and I’m proud that she is eager to help others.
So we are going to attend state EMS meetings, we're going to lobby in DC, and we're going to visit our local firehouses. Together. And somewhere in the midst of the meetings, the layovers and the Au Bon Pain, my kids will learn what Showing Up means. They will learn about standing up for others in need and for themselves. We work every day to teach our kids about kindness, honesty, respect, hard work, and other virtues that will serve them well in life. This year, they get to put those virtues to work by Showing Up for families just like ours.
What’s our action plan for 2016?
1. We will continue to raise awareness by working with our local and state Emergency Services to educate emergency workers about AI.
2. We’re going to continue working with non-profits like the CARES Foundation to raise awareness for adrenal insufficiency and the 2 million people who are not yet diagnosed.
3. We will renew our efforts to reach out to our local, state, and federal lawmakers to advocate and lobby for AI protocols and emergency treatment.
4. We're going to rally. We have a fantastic network of friends and family to help us pursue this goal. There are countless others affected by AI, just like Cambria. Just waiting for someone to Show Up.