Find More Info on Cupcakes for Annie Facebook Page

Our "Cupcakes for Annie" Facebook page is another source of information for adrenal insufficiency, where we post ideas of ways to build awareness and understanding in your community. Come on over and visit us there!

4th Annual Cupcakes for Annie Adrenal Insufficiency Awareness Campaign

April is Adrenal Disease Awareness Month...And almost time to start baking and delivering pink cupcakes to your local fire station!

What is Adrenal Insufficiency? Adrenal insufficiency is a life-threatening condition caused by more than sixty different, and often, rare diseases including Addison's Disease, Congenital Adrenal Hyperplasia, adrenal tumors, pituitary tumors, and adrenoleukodystrophy. Adrenal insufficiency can also be secondary, caused by sudden cessation of high-dose steroids used to treat asthma, COPD, and cancer. It is estimated that as many as 6 million people in the US are undiagnosed.

Why pink cupcakes? Pink is in memory of Miss Annalee, who loved pink. The cupcakes are treats for the firemen and paramedics to eat. If we could make pink steaks, I imagine we'd deliver them instead. But, yes, Annie liked cupcakes, too.

Why do we take pink cupcakes to fire stations? People with adrenal insufficiency frequently experience adrenal crises in response to illness, stress or trauma. An adrenal crisis is a life-threatening event, often necessitating a 911 call, as well as an emergency injection of Solu-Cortef, or liquid hydrocortisone. Firefighters and EMTs are often the first on the scene.

Because it is rare, medical personnel are often unaware of how quickly an adrenal crisis can spiral into shock, coma and death--in as little as 30 minutes. We want to help paramedics and all first responders identify and treat adrenal crises quickly and confidently.

Our big, audacious goal at Adrenal Insufficiency United is adoption of adrenal crisis protocols (rules & regs) for all first responders across the country. As of today, there are ten states that have adopted protocols, including Alabama, Arizona (coming soon!), Maine, Maryland, Montana, New Hampshire, New Jersey, Pennsylvania, Vermont, Wyoming, (in draft form), and some counties in Texas and Tennessee. In addition, bills are currently being discussed in both Oregon and Washington.

HOW CAN YOU HELP?

• Download 10 Easy Steps to doing Cupcakes for Annie for an overview of what to do.
• Bake (or buy) a dozen pink cupcakes (click here for ideas on enlisting your local bakeries to donate cupcakes.)
• Deliver them to your local fire station and thank them for all their work!
• Print this poster and this adrenal crisis pathway describing adrenal insufficiency and adrenal crisis, and the necessity of training and equipping EMS providers to identify and treat it.
• Send your awesome pictures of your fire station visit to me, and I can post them to our Cupcakes for Annie Facebook page.
• For extra credit, call your local news station and ask if they would be willing to share your story.

Have fun with this, be bold, and know that your efforts will save lives.

Thank you so much!

Jean

Researchers Develop Artificial Adrenal System

In all of my focus on caring for Annie, research was never in the forefront of my mind. I was barely keeping my chin above water. Fortunately, there are two doctors, Prof. Dr. Stefan R. Bornstein of the university hospital Carl Gustav, together with medicine Nobel Prize Laureate Prof. Dr. Andrew Shally, for whom research is in the front of their minds, and they've developed an adrenal system that has been successfully tested inside an animal. Read about it here.

What this means is that someday, artificial supplementation of hydrocortisone for people with adrenal insufficiency might be rendered obsolete. And, at least in diagnosed patients, adrenal crises might be a thing of the past.

Wouldn't that be cool?

Jean

Dusty's New Addison's Support Advocacy and Forum

My friend, Dusty Hardman, has just launched her new website, Addison's Support Advocacy and Forum.  When I was caring for Annie, Dusty's former website and forum was a treasure-trove of helpful information mostly geared to adults who are living with Addison's, or primary adrenal insufficiency. This one is new and improved, and I love the way it looks and how easy it is to navigate.

The value of the website for me was understanding what it FELT like to have Addison's. Annie was nonverbal, so she could never say how she was feeling at any given moment--I had to guess. So reading Dusty's blog helped me get inside of Annie's head a little, and try to read her signals better. Dusty's forum was incredibly helpful, too, in that I read how many different people dealt with the daily struggles of AI.

So there you have it--your tip of the day. Check it out.

Jean

Saving Lives With Adrenal Insufficiency Awareness

Cheryl Kornegay, an EMT from North Carolina, is on a mission to train fellow emergency responders on how to identify and treat adrenal insufficiency (AI).

Have her efforts made a difference?

Incredibly so. Since beginning training in October of 2014, five patients in her county were identified as being adrenal insufficient. Five people were helped by emergency personnel who had just been trained on adrenal insufficiency and knew what to do.

Also, as a result of Cheryl’s leadership on how to identify and treat adrenal insufficiency, she was awarded Orange County’s EMS Employee of the Year.

Why is adrenal insufficiency awareness important to Cheryl?

Cheryl has a personal stake in AI awareness. Two years ago, her 12-year-old son, Gabe, was diagnosed with adrenal insufficiency (AI). Cheryl started on ground zero with her understanding of how an AI crisis can turn deadly. Her learning curve was steep.

Cheryl didn’t waste any time. She found Adrenal Insufficiency United, and ordered brochures and a training packet for Gabe’s school. The documentation from AIU helped his school nurse understand the gravity of AI, and why Gabe needs access to hydrocortisone and emergency Solu-Cortef at all times—even on field trips.

Today, when Cheryl isn’t working or at home with her husband Cutler, Gabe and her 14-year-old daughter, Cai, she serves on the board of AIU. Her story is an inspiration to us all that adrenal awareness saves lives.

Thanks, Cheryl!!

Ella and Katya's Cupcake Story

One more cupcake story!

Brenda and her daughters, Ella and Katya, made cupcakes and delivered them to Everett Fire Station #5. Ella and Annie were good friends, and little Katya came along after Annie got sick. I wrote about them in this precious post--one you don't want to miss. Brenda shares the details on their cupcake adventure:

I asked the girls if they wanted to make cupcakes to celebrate Annie's life and to help bring awareness of the sickness Annie had so that other kids might have a chance to be treated sooner.    

 

 I think I had them at cupcakes.

We made the cupcakes and mixed the pink frosting then we were off to deliver them to our local fire station.  

We went to fire station no. 4 in Everett and it seemed like no one was home.  Are they closed? Do fire stations close? We couldn't figure out how to get in so we got back in the car in search of another fire station near by. 

Fire Station No. 5 was the winner.  As we got out of the car their door was just closing.  I ran over and the girls followed with pink cupcakes in hand. We offered the cupcakes and the flier you made.  We thanked them and told them a little about Annie and how the fire fighters and EMT's had been there to help Annie in the past and we are so grateful for what they do.  




Then the girls began to ask all sorts of questions and fire fighter Weir gave the girls the grand tour.  They climbed on trucks, listened to the horn and the sirens and even got to wash their hands in the fire fighters sink. 


It was a great experience and we hope the fire fighters enjoy the cupcakes while looking over the flier about Annie and how to help people with Adrenal Insufficiency.

Thank you, Brenda, Ella and Katya, for telling your story about Adrenal Insufficiency to the firefighters, and for being Annie's dear friends. (I'm glad you persisted until you found Station #5!)

Love you guys, 

Jean

And The Winner Is...

Now don't accuse me of nepotism, but my niece, Lorraine, and her two charming cohorts in cupcake consumption, Grace and Aileen, won the $50 Starbucks gift certificate for sending in their pictures and story. Woo-hoo!

Now, to ALL OF YOU who took cupcakes to your fire stations, schools, churches, and workplaces--thank you for sharing Annie's story and Adrenal Insufficiency Awareness. You made a difference in helping first responders become more familiar with adrenal insufficiency. And you talked about adrenal insufficiency with people you know, which will ultimately make this disease better understood, diagnosed, and treated. Bottom line: you helped save lives.

Thanks again for making April 2013 an amazing month for Adrenal Insufficiency Awareness!

Jean

"One person can make a difference, and every person should try."
 John F. Kennedy, 35th President of the United States, and Addison's Disease patient

Lora-Joy & Landon's Cupcake Story

My name is Lora Joy Adzima. My family lives in Knoxville, Tennessee. I am married to Andy and have two sons, Avery-age 15 and Landon-age 13. After 6 years of knowing something was wrong with my son Landon--I had suspicions in his first year of life--we finally got to the bottom of things and received a diagnosis of Adrenal Insufficiency/Secondary. But after continued problems for the next 18 months, we got a more specific diagnosis of Addison’s Disease/Primary Adrenal Insufficiency.  All we really knew about the disease is that his body had attacked his adrenal glands and he had little to no hormone production. He needed to take hydrocortisone 3 times daily for the rest of his life, needed to carry around an emergency injection of Solu-Cortef in the event of an emergency and needed to wear a Medic Alert bracelet. 

We did all those things, but still didn’t understand the gravity of his disease. It took tons of research and finding a great group of parents on Facebook--Parents of Adrenal Insufficient Children--to really start to figure out this disease. This is where I met Jean Sullivan and her daughter, Annie. A couple of years later, Annie died due to complications of the same disease that my son has. Jean has been an advocate for awareness of the dangers of AI and has been a constant source of support, encouragement and advice to me over the years.

Jean and the folks at Adrenal Insufficiency United started Cupcakes for Annie last year, but I didn’t really participate. But this year I was determined to get involved. Never in all my life did I imagine what was going to happen in Knoxville just by delivering pink cupcakes to Knoxville EMS/Fire Departments.

My family started one Sunday night and took Cupcakes for Annie to two local fire stations. It was such a positive experience that I wanted to take some to a couple of other fire stations. I was amazed that most of the First Responders didn’t even know what adrenal insufficiency was. It was scary. I also was surprised by the interest EVERY fireman and EMS personnel showed in trying to understand what the disease was, how dangerous it was in an emergency situation, and wanting to know what they could do to help. We received countless phone numbers of officials to call in Knoxville. I started compiling a list and started making phone calls.

Lora-Joy & sons Avery (in back center) and Landon (holding cupcakes)
sharing Adrenal Insufficiency Awareness
at Fire Station #9 in Knoxville, Tennessee

In the meantime, I spread the word about Cupcakes for Annie through Facebook and email. I am a speech language pathologist and work at an elementary school. For two weeks solid, my co-workers brought pink cupcakes to share with the staff. They also donated change for those two weeks, which produced over $50 to donate to Adrenal Insufficiency United. Also during this time, I had countless friends helping to deliver Cupcakes for Annie all over Knoxville! 

I decided that every EMS/Fire Station in Knoxville was going to receive Cupcakes for Annie and hear our plight to get life saving medicine on all emergency vehicles in Knoxville and hopefully the state of Tennessee.  My sister in Murfreesboro delivered Cupcakes for Annie to over a dozen fire stations and to Vanderbilt Children’s Hospital in Nashville. My aunt in Hereford, Texas delivered Cupcakes for Annie to several fire stations in her town. It was amazing--I was so overwhelmed by support from all of my friends, co-workers, family members and community!

By this time, I had already talked to the fire chief of Knoxville and he got me in touch with the Quality Improvement Officer of the Knoxville Fire Departments. He was 100% on board with making protocols and medicine on vehicles a priority. Things were happening!

As of today, all of these organizations have received Cupcakes for Annie:

·      13 Knoxville Fire Departments

·      1 Knoxville Volunteer Fire Department

·      3 Rural Metro EMS/Fire Departments

·      1 Anderson County, TN Fire Department

·      1 Union County, TN Fire department

·      Over a dozen EMS/Fire Departments in Middle TN

·      1 Fire Department in Dickson County, TN

·      Vanderbilt Children’s Hospital

·      2 Fire Departments in Hereford, Texas

·      1 911 Call Center in Morgan County, TN

·      The Pediatric Endocrinology Clinic at East Tennessee Children’s Hospital received Cupcakes for Annie and parent information from Adrenal Insufficiency United

·      9 more Rural Metro/EMS/Fire Departments in Knoxville are scheduled to receive Cupcakes for Annie (being delivered by our family and some of my friends in Knoxville)

Dr. Tapiador, Landon's endocrinologist, and Landon

   

       In addition: 

      A local bakery, Tellico Grains in Tellico Plains, Tennessee did a cooking segment on 10 News at 12 (a local news station) where she made pink cupcakes and shared about the Cupcakes for Annie Campaign.

·         My niece shared with her online class about Adrenal Insufficiency and the Cupcakes for Annie Campaign

·         Both of my sons, Avery and Landon, presented information and shared Cupcakes for Annie with their homeroom classes at their school.

·       $122 was collected as contributions in Landon’s honor to Adrenal Insufficiency United.

·       I passed out information about a possible support group for parents of  children with adrenal insufficiency in Knoxville and surrounding areas to the Pediatric Endocrinology Clinic at Children’s Hospital.

·      My family has been invited on a local News Talk Radio Show, 98.7 FM in Knoxville on April 30th to talk about Adrenal Insufficiency and what we are doing to raise awareness.

·        The main newspaper in Knoxville, The Knoxville News Sentinel, is doing a feature story on Landon, our family, Cupcakes for Annie and Adrenal Insufficiency Awareness. They are following us on May 2^nd as we deliver Cupcakes for Annie to a Fire Department where they will take pictures and cover the story.

·        And the BEST news of all is that through all of this and my contact with the Knoxville Fire Chief and the Quality Improvement Officer of Knoxville Fire Departments, Emergency Protocols and life saving meds will be on ALL Knox County and City of Knoxville Ambulances and High Priority Fire Engines within the next couple of weeks. The meds have ALREADY been ordered!  

Again, I would have never imagined that all of this would happen in just 30 days! It has been an amazing experience. And it was all done in honor of, and in memory of sweet, precious Annie Sullivan.

I will leave with this: I will not stop until these emergency protocols for adrenal crises are adopted in EVERY county of Tennessee!

Lora-Joy Adzima

What can I add to this story but thank you, Lora-Joy, and to your family and friends who have done so much to raise awareness of Adrenal Insufficiency and bring change to your corner of the world and beyond as you influence the rest of us! You guys totally rock! --Jean

Jody & Zoe's Cupcake Story

Jody and I first met about 11 or 12 years ago at church, and became friends after the births of our little girls, Annie (mine) and Zoe (hers). And like many moms, we discovered the happy benefits of sharing babysitting. Annie and Zoe were two peas in a pod:
  

Well, sometime in late 2006, Jody and her family moved to Oklahoma, and we lost touch, and the next time I saw Jody was after she had moved back to our area in August of 2011. I ran into her at the local grocery store, and we immediately picked up where we left off--except Zoe was with her and I was alone. So while I caught Jody up on the past five hellish years, eight year old Zoe occupied herself with greeting cards on a kiosk, and at some point looked up at us and asked, Mommy, why are you crying? Truth is, everyone who passed us in the store was wondering the same thing as we dripped, sobbed and hugged our way through the conversation.

A few days later, I gave Zoe one of Annie's teddy bears. Jody told me later how she overheard Zoe up in her room one day telling her little sister, Braelyn--who ironically bears a striking resemblance to Annie--that her friend lives in heaven with Jesus now and she wanted me to have this bear. So Annie's bear now resides on Zoe's bed, nestled on top of her pillow.

This week Jody wrote:

When I told Zoe about "Cupcakes for Annie" she was so excited to make them and take them to her school. We had fun making all the cupcakes and then took them to Zoe's school, Cedar Park Christian. Zoe explained to the principal and office staff about her friend Annie from when she was little, who had been completely fine and went to bed one night and had a brain seizure because she had undiagnosed Addison's Disease. 

We printed many of the flyers and put the cupcakes in the teacher's lounge, asking everyone who took a cupcake to take the flyer. We were so glad to be part of sharing the awareness of Adrenal Insufficiency.

--Jody

Thank you so much, Jody and dear Zoe, for sharing Cupcakes for Annie with your school staff, and how Adrenal Insufficiency has affected you. I think someday you will know that God used you to save a life.

Big hugs!

Jean

Grace & Aileen's Cupcake Story

Two things you need to know about Grace and Aileen. They are identical twins. And they are Annie's cousins. Grace and Aileen learned way too much about Adrenal Insufficiency when Annie had a brain injury as a result of an adrenal crisis.

Before Annie's brain injury, I took this picture of Grace, Jack, Olivia holding Annie and Bill. Grace, Aileen and Annie used to swing together out in our backyard yelling Kumbaya at the top of their lungs.

Here are Grace and Aileen with Annie touring Seattle in October of 2010. (Their mom, Lorraine, and Annie's dad, Bill, are in the picture too.)

Last week, Aileen and Grace made Cupcakes for Annie,

the night before telling their class at school about their little cousin who 

died from complications of Adrenal Insufficiency:

And here they are with their Girl Scout troop:

The troop picture was taken while they were camping, 

so they didn't have any cupcakes there--

but they drew pictures of cupcakes on the back of the Cupcakes For Annie flyers, 

which is kinda the same, only they probably didn't taste as good.

Adrenal Insufficiency isn't just an obscure disease to Grace and Aileen. They stood at Annie's grave with shoulders heaving and tears streaming the day we buried her. They know what devastation it can bring.

Thank you, Grace and Aileen, for bravely sharing about Adrenal Insufficiency with your friends, school and Girl Scout Troop. Your love for Annie shines through you both!

Love you,

Aunt Jean

Cupcake Stories

Cupcakes for Annie is going full-steam, and we have extended it for the whole month of April to get those cupcakes to your fire stations, emergency rooms, schools or wherever you know people need to know about Adrenal Insufficiency. So if you HAVEN'T YET taken cupcakes anywhere, be bold and get out the word! Go to this link, print off a flyer, take it with you and say:

1. Adrenal Insufficiency is deadly, but so treatable.
2. We need awareness of the disease and its symptoms of:
    bronze skin, dehydration, fatigue, stomach pain, & weight loss.
3. We need emergency Solu-Cortef on all ambulances, because when a person gets sick or has trauma of any kind, they could suffer a brain injury like Annie did--or die--in as little as 30 minutes without treatment.

Now, for those of you who ALREADY HAVE taken Cupcakes for Annie--and you know who you are--please send me a picture and your story so I can post it here. I have been reading some amazing things on Facebook, but I know you all aren't connected to everyone there, so please send me a picture & your adventure story, so everyone can know what you've been up to.

Again--if your name is chosen in our drawing, you get a $50 gift card to Starbucks. And if you're in my area, I might just throw in a dinner with Bill & me. Such a deal.

Thank you SO much for making a difference for all my friends with adrenal insufficiency and for those not yet diagnosed. You are saving lives!

Jean

2nd Annual "Cupcakes For Annie" Adrenal Insufficiency Awareness Campaign

Last year, my friends at Adrenal Insufficiency United launched an awareness campaign called "Cupcakes for Annie." Anything involving cupcakes must be good, right? And easy. But what a difference a cupcake can make, if it helps people to THINK Addison's! So here's what it's all about:

WHAT: "Cupcakes for Annie" Adrenal Insufficiency Awareness Campaign

WHEN: April 1-13, 2013 

(to correspond to Annie's birthday, April 7, 

and the discoverer of Addison's Disease, Thomas Addison's birthday, April 2, 1793)

WHO? 

Addison's and all forms of adrenal insufficiency are rare, but there are at least 200,000 people in the United States who are affected. Many more are probably undiagnosed, like Annie was.

WHY?
Addison's is life-threatening in the event of illness, trauma, or injury, because if medicine isn't given within 30 minutes, a person in crisis could die. And ambulances typically don't have the emergency injection of Solu-Cortef on board that is required to save a person's life. The bottom line: the trip to the ER might not be fast enough. Adrenal Insufficiency United's goal is to have Solu-Cortef on board ALL ambulances by 2015.

AWARENESS SAVES LIVES 

Awareness of Addison's and adrenal insufficiency, and having the emergency injection of Solu-Cortef on ambulances saves lives. Solu-Cortef is cheap--usually under $10.00 per vial, and has a shelf-life of 5 years. All EMS technicians should have it in their tool boxes, and every emergency physician should be able to recognize the symptoms of Addison's and an adrenal crisis, which can include:

Bronze skin (especially on the skin creases or scars)

Dehydration

Fatigue, weakness, muscle aches

Low blood sugar

Low blood pressure, especially when standing

Stomach pain, nausea or vomiting  

Weight loss

HOW CAN YOU HELP?

1. Print out this "Cupcakes For Annie" flyer.

2. Bake, buy or ask your local bakery to donate (show them the flyer) a dozen cupcakes. (Pink cupcakes are preferable, but entirely optional!) 

3. Take the cupcakes to your local 1. fire station, 2. hospital, 3. church, or 4. school, and tell them about Addison's Disease.

4. Take a picture of your adventure.
5. Send it to me.

BONUS PRIZE 

Everyone who takes cupcakes to a fire station, hospital, church or school, takes a picture, and sends it to me by April 21, 2013, will have their story published on this blog and be entered to win a $50 Starbucks gift card. Pretty cool to be able to have your cupcake and coffee too, eh?
(Contest winner will be announced by April 30, 2013.)

So there you have it--all you need to know to make a difference for people with Addison's and adrenal insufficiency--like Annie.

Happy "Cupcakes for Annie" Adrenal Insufficiency Awareness-Making!

Jean

Rare Disease Week Debrief

I landed back in Seattle on Friday night, did a couple hundred loads of laundry on Saturday, went to a class and to church today, and now have a couple minutes to update you on the events of last week in Washington, DC.

Rare Disease Lobby Day/Week was an amazing experience on a number of different levels:

First, I'd never been to DC, so I was able to visit many of our national monuments, government buildings, and historic landmarks such as the Capitol building, the Smithsonian Museums, the National Cathedral, and the Starbucks in Union Station. Sorry I didn't get a picture of the Starbucks. But they're all the same, so you already know what it looks like.

Second, I learned from Global Genes Project--one of the sponsors of the event--that of the approximately 7,000 rare diseases that exist, there are only treatments for about 400 of them--and no cures. In addition, one in 10 people in our country has a rare disease--30 million people in America, and 350 million worldwide. Sadly, 50% of those with rare diseases are children, and many of them never reach their 5th birthday. Read more here. 

Third, because Rare Disease Lobby Advocates arranged appointments with legislators, I was able to meet with Maria Cantwell, and aides to Rep. Rick Larsen, Rep. Doc Hastings, and Senator Patty Murray. Two fellow Washingtonians, Jason and Andrea--people who suffer from rare diseases themselves--and I walked a gazillion miles on Wednesday as we hiked from one Capitol office building to the next, sharing our stories and the need to fund research at the National Institutes of Health (NIH) for treatments and cures of rare diseases.

Fourth, while telling Annie's story I was able to also highlight the need for Addison's Awareness, and Adrenal Insufficiency United's goal to get emergency medicine "Solu-Cortef" on all ambulances in the nation.

Thankfully--and in answer to your prayers--everyone we spoke to was receptive, and genuinely seemed to want to help. Honestly, with all the meetings these people had that day regarding the sequestration, for them to have any interest at all in what we were saying was an act of God. I was so impressed with the kindness and compassion of the people we met with.

Coincidentally, on the way home I sat on the plane next to a doctor who works with the NIH on funding grants for cancer research. We had a great discussion on what he does, and of course, I told him all about Annie and Addison's Disease. Her little life touches many hearts, even now.

What's next? Well, I'll be following up with my legislators here in our state, to keep Addison's Awareness and the emergency-medicine-on-ambulances goal up front and center. My next post will detail our next project on all that.

Again--thank you all so much for your prayers & support. I was honored to be a part of the important work that Rare Disease Lobby Advocates, Global Genes Project, and my friends at Adrenal Insufficiency United are doing to help people who suffer from rare diseases...like Annie.

Jean

Rare Disease Week--February 25-March 1st, 2013

Two of my Adrenal Insufficiency United compadres, Kimberly Doran & Kirsten Norgaard, and I are going to Washington, DC for Rare Disease Conference and Lobby Day. We were together last year in May at a Fire & Emergency Medical Services conference in Las Vegas, highlighting the need to have emergency medicine for AI on board all ambulances. Our message will be the same in Washington: help us put national protocols in place to train medics about AI, and have Solu-Cortef on every ambulance in the United States.

I will also have the opportunity to share Annie's story and the need for Adrenal Insufficiency Awareness to legislators from our state. RDLA is organizing this--which is great, because Maria Cantwell would probably hang up the phone if I called her--we're just not that close. Actually, I don't know who all we'll be meeting with, but whoever they are, they'll be more people who know about Annie, and more who will become aware of Adrenal Insufficiency. And--our meetings will provide a much-needed break for them from the sequestering drama. Which, by the way, does have an impact on issues relating to rare diseases...but I digress.

Then on Thursday, we'll go over to the National Institutes of Health for their Rare Disease Day events.  So--lots of things to learn, and lots of people to hear Annie's story. Please pray that we meet with whom we need to meet, say what we need to say, and that God maximizes the impact of the events of the week for the common good of all the people who deal with difficult health challenges.

Thank you so much, and I'll keep you posted as things unfold.

Jean

Open your mouth for the speechless, in the cause of all who are appointed to die.
Open your mouth, judge righteously, and plead the cause of the poor and needy. Proverbs 31:7-9

Annie's Adrenal Crisis

"Those who don't know history are destined to repeat it." Edmund Burke

In light of those words of wisdom, let me tell you Annie's story again. My thought is that if you or someone you know ever shows symptoms like Annie had, you will run to the doctor--preferably a diligent endocrinologist--and avoid the tragedy that happened to us.

Six years ago today, on January 21, 2007, my three and a half year old daughter, Annie, suffered an adrenal crisis that resulted in a severe, hypoxic brain injury. We put her to bed with a little cold, and the next morning we found her blue, eyes staring straight ahead, teeth clenched, and arms pulled up to her chest. She was in an on-going seizure after her blood pressure dropped and her blood sugar had dropped, causing her to go into cardiovascular collapse.

In the year prior, beginning in January 2006, she had had multiple episodes of dehydration, stomach pain, nausea and vomiting. She had been hospitalized for three days, we had taken her into the ER three times, and to the doctor many times in between. No one diagnosed her with Addison's disease, or adrenal insufficiency. No one referred us to an endocrinologist.

She took three hour naps. She was thin. She craved salty Goldfish, pepperoni, and pizza. She also began to be fearful of little things like walking down steps alone--things she had previously been doing fine by herself. And her skin got progressively darker until she had a tan that prompted a friend to start calling her "Malibu Barbie."

Then one night in January I put her to bed with a cold--and she almost died as she slept.

Addison's Disease is a disease of the adrenal glands, and results in adrenal insufficiency, or AI. AI can also be caused by secondary problems such as tumors of the pituitary gland, or adrenal glands, or injury. The adrenal glands produce cortisol, which is necessary for your body to fight illness and stress. If your adrenal glands don't work, you are at risk of an adrenal crisis--a life-threatening event.

The treatment for Addison's, or adrenal insufficiency is simple: hydrocortisone tablets, usually taken three times a day, to mimic the way our adrenal glands supply our bodies with cortisol. During times of illness or stress, the dose is increased double or triple to mimic what the body does naturally to fight off infection. In times of crisis, an injection of liquid cortisol (Solu-Cortef) is given.

Annie was saved from dying that morning, but not until after she had already sustained a catastrophic brain injury. She lived for four years without ever regaining the ability to walk independently, say more than 5 words, or eat. And her brain function went from precocious 3 1/2 year old to infant--overnight. Annie passed away on March 25, 2011 of complications of the flu. We grieve the loss of that blond-haired, pink-bowed sassy little girl, but are continually comforted that we will see her again in heaven soon.

~~~~~~~~
What does this all mean for you?

If you or someone you know has weakness, or gastrointestinal symptoms such as nausea, vomiting, weight loss, dehydration, and has unexplained darkening of skin color--think adrenal insufficiency. Adrenal insufficiency can develop at any age--young children, teens, adults--boys, girls, men or women. Get to a doctor--an endocrinologist--and insist on a simple cortisol test. It could save your life!

If you are a parent of a child diagnosed with adrenal insufficiency:

1. Be diligent in times of stress or illness. Trust your gut--if your child looks or acts the least bit sick, assume they need a stress dose of hydrocortisone.

2. Train family members, caregivers, teachers, and school nurses on stress-dosing and giving the emergency injection. Train them on recognizing the subtle signs that your child needs more hydrocortisone. Train them on what an adrenal crisis looks like for your child, and what may cause it.

3. Learn as I did that calling 911 is not a substitute for giving the emergency injection in a crisis. Driving to the ER is not a substitute for giving the injection. Every second counts. Get over your fear and queasiness and give the injection first and then go get help.

4. Join our Facebook group Parental Support for Adrenal Insufficient Children or see our Facebook page "Cupcakes for Annie"  and get support from other parents.

5. Finally--Read, read, read about AI. Learn about the subtleties of your child's brand of AI. You will become the expert on your kid. Be a bulldog advocate for them. Don't be pushed around by anyone who minimizes or brushes off what you know to be true.

Remember to learn from my history--Annie's history--and recognize the signs of adrenal insufficiency. If her story saves one life, it helps to redeem our loss.

Jean

Comfort For Those Who Grieve

Like many of you, I spent much of yesterday reading, listening and watching as details of the evil done at Sandy Hook Elementary were reported on the news. Having lost a child, I mentally compared their loss to my own. Isn't that what we all do? What would I do in that situation? How would I feel? 

I have to say that the one thing that kept coming to mind is how tortuous it would be to know that my child's body was in there, and I couldn't be with them to hold them, touch them, and comfort myself by comforting their body one last time. Even in death, you want to be close to your little one. They may be gone, but their hands, their little toes--you want to etch them in your memory so you never forget. It grieves me that these families were denied this, and that what memories are seared into their minds are so painful. I pray for healing of their hearts and minds.

I mourn for those mothers, fathers, brothers and sisters. They are 24+ hours into a dark tunnel that won't have light in it for a long time. They have suffered an amputation in their families. Their child's absence will be felt in innumerable ways, for as long as they live.

The empty chair at the table.
The missing smile in family photos.
The car rides where their child's laughter is only a silent echo.
The name on the insurance card of one who no longer requires checkups.
The bed that remains perfectly made, with favorite toys waiting motionless on the pillow for a child who will never play with them again.
The gifts that will sit unopened under the tree.

Grief will lay heavy on these families for a long time, like an unwelcome, suffocating blanket.

What can help? What can restore hope to these families whose loved ones have been violently torn away from them?

First, I think it's good to acknowledge that although there are many similarities to how people grieve, no one's grief is the same as anyone else's, and frankly, no one's is better or worse. Your grief is yours. It's your loss, and you feel it in every wretched detail. So although it's not good to compare grief, there are similarities that can serve as guides along the way for someone new to grief.

Here are a few things that helped me:

1. Resolve the Why question. Some people struggle with why? and some don't. For those who do, I'd recommend the book I've talked about here before, "If God is Good: Faith in the Midst of Suffering and Evil," by Randy Alcorn. A book especially helpful, I think, to address the evil perpetrated upon these kids and teachers at Sandy Hook. The bottom line is, some things transcend why, because there is no good reason someone would do what that person did yesterday. So really, why isn't a good question. What answer would begin to adequately explain why? It would be an offense to the memory of those killed to say that this happened for such and such a reason. There is no reason--it was evil, plain and simple.

2. Where was God? Often the question why did this happen? is followed by where God was when it happened? It comforts me to know that God saw it and He hates it. In fact, that's the reason Jesus came to earth--to conquer the evil that has a strangle-hold on us and our world. Jesus was tortured, murdered, died on the cross, and rose from the dead, conquering Satan, sin and death. He is coming again to judge the living and the dead, and those who believe He died for their sins will be forgiven and saved from God's wrath against evildoers. So to answer the question "Where was God?" God was there, and He is coming again. And the shooter at Sandy Hook is at this moment receiving just punishment for the evil he has done.

3. Where is God now? This is the most important question, I think, and the one that will give them the most comfort in the days ahead. For us, God demonstrated His comfort through the people He sent us in those early days after Annie died. People who brought food to us, who sent us cards and flowers, people who came by to give a strong hug. Friends who called to invite me to coffee or lunch, or who came to dig weeds in our yard. Friends who e-mailed. God was near to us in our grief through His people.

And for us, when the calls from friends faded away, God continued to comfort in unexpected ways:

~~The kindness of a clerk tenderly wrapping a bouquet to be placed on her grave: "How's this? Pretty pink for a pretty princess."

~~A breathtaking rainbow over the cemetery to remind us that God keeps His promises, and we will see Annie again.

~~And dreams--like the one I had last night. I don't remember if I've ever dreamed of Annie since she died. But after yesterday's news, all the memories of Annie's death came right up from where I'd buried them the last time. And God gave me a dream about her. I dreamed that Annie talked to me again.

I was helping her clean up her toys, and was singing the clean-up song, to which she chimed in, "Everybody do your share!" And how amazed I was that she could talk again, and I thought to myself: it's probably because we've taken her off a lot of her seizure medicine recently...

After I woke up, I thought how comforting it is to know that Annie does talk again now, and she doesn't take medicine anymore!

I pray that thoughts like these would comfort the moms and dads of Newtown now and through their days, months and years of grief.

Dear Lord, be with those who mourn tonight. Heal their broken hearts and bind up their wounds. May the sweet memories of their loved ones replace the painful memories of the last two days. And be with them through the loving acts of friends who will weep with them as they weep. Amen.

Jean

Behold, the virgin shall conceive and bear a son, and they shall call his name Immanuel, which means God with us." Matthew 1:23

Thanksgiving 2012

This past Thursday marked our second Thanksgiving without Miss Annie. One of the things I'm working toward is being thankful we had Annie for almost eight years--instead of always grieving that she's no longer here. Those moments of overwhelming sadness are becoming a quiet thankfulness that she was here at all, if only for a much too short time. God knew the number of her days before she was born--that she would make a cameo appearance in the story of our family, and then be gone. And I'm seeing that more...and accepting it more.

I was thinking about that idea: that her time here with us was ordained to be brief. Odd to say that out loud. And I notice things now that somehow confirm that. For instance, a few years before Annie was born, I made personalized Christmas stockings for my six other kids with a diy canvas type material stocking I found at Joann Fabrics. And each year after she was born, I'd look for the same kind so I could make one for her. But I never found one--not online, not in any stores. So I got her a different stocking--one with a reindeer on it. And although it was cute, it never matched her sibling's stockings.

Reflexively, every Christmas I still look for that elusive match. I was wandering around in Hobby Lobby, that cavernous import-home-decor-craft-orama, where wandering around aimlessly is about all you can do without a compass or some crumbs to leave behind. But having been there more often than I will admit to on this blog, I had no trouble finding the "50% off all Christmas" aisles. And after scanning the plastic picks, sparkly ornaments, and fake wreaths, I turned the corner to see the floor to ceiling display of Christmas stockings.

Of course, my first thought was to look for a stocking for Annie that matched her brothers' and sister's. But then the immediate mental reminder: No, I don't really need to look for a stocking for Annie do I?

Oh. Right.

But Annie was here for a brief little while, wasn't she? And I am thankful for each moment we had with her.

Poppie

Annie's grandfather, George William Sullivan, affectionately known as "Poppie," passed away on August 23rd. He was 89 years old. Married Grandmommie right before he went off to war in 1943. Our Miss Annie was his youngest grandchild, although he had been collecting quite a few great grandchildren in these last few years.

Poppie was born in Missouri, so that's where he was buried last Saturday--beside his infant daughter who died at birth in 1947. My husband, Bill, and assorted siblings and relatives stood half under the awning, half in the rain and watched the military honor guard present the flag to his mother. A handful of elderly Navy vets came to pay their respects too.

Poppie liked See's Candy, Sharp's non-alcoholic beer and Jeopardy. And although he'd never admit it, he also liked the hugs and kisses he got from his kids and grandkids in his later years.

He said in the ER that the most important thing was to die be at home with Almeda, his wife of 69 years.

We will miss his crotchety old self.

Jean

Dusty's Vol-State Race Report

I'm sorry I've been AWOL for AWhile. A few things have been going on this summer, not the least of which is that Bill's elderly father is at home in hospice care, and the whole family has gathered around to care for him in his final days.

I'm there now, but had a few moments to share the link to Dusty's Vol-State Race report. I'm so impressed with her accomplishment: 314 miles in 9 days! And, she raised $5,161.40 that helped Adrenal Insufficiency United educate first responders on the care and management of AI. So proud of Dusty, and Jennifer at AIU, for pulling this all together!

Jean

Dusty's Race

My friend Dusty is about to begin Day 3 of the Last Annual Vol-State Road Race to benefit Adrenal Insufficiency United that I wrote about here. Keep up with her adventures across Tennessee here.

Dusty is raising funds so that representatives from Adrenal Insufficiency United can attend  the International Fire-Rescue Conference in Denver, Colorado in August.

AIU will share with 13,000 emergency medical professionals

1. What adrenal insufficiency is,
2. How to identify a person in adrenal crisis, and
3. Why injectable liquid hydrocortisone (Solu-Cortef) should be carried on all ambulances/aid trucks.

Join Dusty in saving lives by bringing awareness of adrenal insufficiency. Give here.

Thanks! And Go, Dusty!

Jean