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