You are the reason i will never give up

To the boy i never knew. 
My dearest angel 
We have never met. But i want you to know that you are the reason i am trying so hard to raise awareness to this cause. Ultimately you are My entire reason. This so easily could have been someone writing something similar to me.

           3 years ago my world was a lot different to what it is now. In fact from this time my life was to change forever.

 I had never heard of adrenal insufficiency. I had a poorly daughter but I didn't know she was that sick.

In a way my ignorance to this saved me from dreadful pain and worry for those 14 years when she was growing up and undiagnosed. 

But very quickly i realised this cannot be ignored ..  

            She is only so ill now because it had been ignored for far to long. I had little idea how bad things were when i started researching.

               The first clear signs of this  were when the nurse told us this was a life threatening condition. And emergency medication should be carried at all times. 

We were then given an outdated contraption , to save her life if we needed to. It was in the form of 2 needles a syringe and a glass vial full of the life saving  liquid cortisol. I questioned the nurse. Surely there is an epipen / quick injection pen for this? 'No' she said ' unbelievably there isn't'. 

I then was almost expecting a big folder of information on the condition. An explanation. Why has she got this? How will it affect her? Could she really die within 30 minutes of a trauma? Are there any help groups? Do we have access to free emergency bands? Id? do we get direct emergency protocol and quick access to the hospital ? An emergency card to show medical people?

                 We got nothing. Just an A4 sheet of paper explaining when the injection should be given.

It was then right there in my mind i could feel the danger Molly was in and so i started the quick injection pen campaign. 

I worked so hard on this we had over 10,000 signatures and I'm glad to say it has had a fantastic result. The device is well on its way to being brought to market soon.

My husband of all people was the first to say. So you have done it surely you can step down now. He could see this campaign and all its efforts had compleatly taken over my life. However I realised early on that the pen was not the only serious life threatening problem here. 
               A few months in to the campaign. I was in contact with Melissa. She was the mum of a two year old boy who had died from complications due to adrenal insufficiency. He became the face of my first Christmas campaign. He was so beautiful.. Blonde  Hair blue eyes and the most gorgeous smile. 

Sadly this lovely bubbly toddler was not the first or last life claimed by this  tragically failed condition. 

So many lives have needlessly been lost. very young lives which could have been saved had medications and awareness to this condition been of a better standard. 


                 When you mum posted this to my page It broke my heart. 

'Awareness is so important. My son Rowdy was diagnosed with Addison's about 4 years ago. One week ago today I laid my son to rest at 13 years old. He went into cardiac arrest from a typical virus. They lost him four times in the ER. We spent one week and one day in ICU, thinking we were just waiting for him to wake up. Brain activity was good and heart was good. Five days later there was only slight swelling of the brain, which we were assured medicine they were giving him would fix. But then on the final day the brain scan showed that the blood had drained from his brain and it had slipped down to brain stem, so my precious boy was brain dead. I did everything I was told to do by his doctor, but it wasn't enough!'

             You were 13 years old. The same age as my 3rd daughter. With the same illness as my second. Louisiana is a long way from here its the other side of the world. But from speaking to your family i feel a great connection them and you. You seem just like us, a normal happy family, Something like this should not have happened to you .  

Today i have been painting your portrait as you are the reason for our awareness campaign this Christmas.  You and these other precious children should still be here. 

              There are no words to explain how your family must feel. I have sadly experienced the death of my own brother which has impacted on my life in so many ways. That also changed me as a person forever, he was 21. 

         But any parent who has to say goodbye to their child is something i cant even begin to imagine. 

               To think this could have been us in any of the 14 years before molly was diagnosed hits us hard.
             Rowdy you are in my heart and whenever i feel defeated by this i will remember you and your family. We have to fight for better awareness. More research, better medications and treatments. We must stop this happening time and time again.

I am just so sorry things were not better enough to have saved you.

Rowdy Williamson February 2016 age 13