Tuesday, April 30, 2013

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 2nd 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


aunt rebecca said...

God bless you and your beautiful family, Lora-Joy!

Gretchen said...

This is amazing. Tears as, again, I think of the ripples of knowledge and safety are flowing from Annie's pebble. I bet this news makes her twirl especially hard for Jesus. :)