A Mighty picnic

Why will a picnic save a child’s life? Believe
it or not someone asked me this question the other day.
 I would just like to
publicly reply and to everyone else who is wondering the same thing. 

In 2013 I was in a dark hole, I feared for
my child’s life, I knew nothing about her newly diagnosed condition. The hole
was black. I was snappy I did not sleep; I did not care about anything else. My
hands would shake just making a cup of tea and I felt sick most of the time.
 I
stayed there for a while just buried under this heavy filled in hole of
awfulness.

I suppose you could have called it shock?
Depression? I don’t know. I even got angry one day when someone was rabbiting
on about the weather to me. Wtf are you talking about?? I was screaming inside
my child might die and you are talking about hailstones??? I seriously wanted
to ninja this person right out of the sky! 

          This black
hole went on for weeks I wanted to just cry at everyone I met and I fully
expected them to cry back at me. It was like a form of bereavement. It wasn’t
fair… why me again? My brother died in a car accident age 21 and it has
left me with a very precious view of life. I was 23 at the time and
since that day I’ve not been the same. Our mortality is so precious.

         Then one day i was saved. My friend Vicki
came to see me. She has the same condition has Molly (well a different variety)
Addisons. She made me feel a bit better but also her words kicked my ass in to
gear. From what I had gathered already the care, medication and awareness to
this disease was atrocious. When Vicky and I spoke I could feel the
hole was in subsiding. My grief and worry was turning in to determination
and fight.

There was thousands of people all over the
world with this thing (adrenal insufficiency).

Vicki runs a UK support group along with
others I now know and care for. As time went on I joined more groups and the
horror was just unfolding in front of me.
 People were dying. They were dying
mainly because they were not treated in time. In Emergency an anaphylactic shock for allergy needs
adrenaline …

An adrenal crisis needs cortisol.

Both injectable both prevent death. Only in
adrenal crisis this is not happening and it is not happening over and over
again. 

It is a simple injection and given on the
orders of the patients id band or the patient’s carer! It will save their life and
prevent coma or brain injury.

             So what has this got to do with picnics?? a slightly weird link you may think?

Answer: It is the familiar word to your ear!
It is something that as it grows people will become aware of. 

Did you know what ALS stood for before
the ice bucket challenge? Few people did. 

So Molly’s worldwide picnics are my
ALS ice bucket challenge. Molly is too ill to be covered in ice but she
does like cake! …
 

           Anyway
we are now in our third year of Adrenal insufficiency awareness
day and Molly’s picnics!  It is growing year by year. Last
year we had 130 worldwide picnics. It’s not about raising money or having a massive fancy pants picnic, it can be a picnic for 2. It
is all about raising awareness so that research can be done. Medication
development can go forward.

And more importantly in the event of life and death! A link in
people’s minds can be made between adrenal insufficiency and emergency cortisol.

Just like links between allergy and adrenaline (epipens) Asthma attacks and blue Ventolin inhalers.

          In the state’s people are working very hard to change emergency
protocol because in most states emergency services do not even carry
cortisol injections.
 

           
    I suppose the moment in my conversation with Vicki that day was
when she told me about when she  she was going in to Adrenal crisis and was refused the
injection by a paramedic. 
This scared the hell out of me because she could have
died there and then. She also lives 5 minutes away from me I couldn’t imagine this
happening to moll. 

             In total 6 children have died in the 3 years I have been aware of this
disease and as many adults one beautiful lady in her 20’s is currently fighting
back from a coma. Her mother was told to turn off the life support machine .
This young lady was not given her injection in time and how she survived is a miracle.

            There are many more problems in this area concerning medication / treatment and
care, but for now we have to get the message of awareness out there.

This year’s picnic is dedicated to 13 year
old Rowdy Williamson who sadly died in February this year from complications of
a simple virus and his adrenal insufficiency.
  

So please consider having a picnic for
Rowdy. His mother family and
friends are absolutely heartbroken we must do something to prevent these
unnecessary deaths. 

So that is the link between picnics and adrenal insufficiency. Please join in our Mighty picnic for Rowdy https://m.facebook.com/events/1326985233983754