It is 5.30 am.
I have to write this down now before The anger inside me subsides.
I have just received a story in the press about a 12 year old boy with adrenal insufficiency.
He died needlessly because Doctors would not take his mum seriously when she tried to explain again and again his symptoms and how ill she knew he was.
find this so hard to write because i have the deepest respect for doctors and health professionals, they have saved my daughters life many times.
The thing is they are not machines they are human beings, every one of them
is different. Like you and I mortals there are bad ones and there are good ones.
Today’s story is is beyond terrible and is one in a long line.
Another family brought to destruction
because they have lost someone they love, a little boy who could and should have lived a happy long life.
Unfortunately i have heard this same story time and time again.
One death is enough to horrify any decent human being, but in the two and a half years since Molly was diagnosed I have seen six children die.
This is hideous! it has to stop!! WHY WON’T
PEOPLE LISTEN? Why? I just don’t get it, THESE ARE PEOPLES CHILDREN! ITS 2016!!! I swear to god i cannot shout loud enough.
I started this awareness campaign after 14 years of hell. Molly has basically had her
childhood ruined because of illness . And yes i am angry! She should have been diagnosed As a baby AND these children should have been safe.
How Molly survived we do not know, but she has been left with very poor health a
terrible education and she uses a wheelchair because her body is absolutely worn out.
She is 17 years old.
Believe it or not though we are the lucky ones. She is still
here and THAT is why I have to keep shouting about this!.
It was only 2 months in to my campaign when a mum contacted me about the death of her 2 year old. He was the most beautiful blonde
haired sweet little boy. He had died due to complications of an adrenal crisis. A condition which should be manageable in this day and age. His beautiful angelic image became the face of my first Christmas awareness campaign.
could not comprehend what this poor family had been through but as i sadly became aware this awful occurrence was not unusual. A few months later i read of a local girl who was not diagnosed despite visiting the gp several times.
died at home from an adrenal crisis. The Doctors had failed to diagnose her despite her showing all the classic symptoms of Addisons disease (primary adrenal insufficiency) She was 17.
Her mom did all she could
to raise awareness following her death. Her child died because a simple diagnosis was not made it is hideous.
A teenage boy in the UK as reported last year was
also not diagnosed after being ill for a long time, he too died of an adrenal crisis. His father battled to have his cause of death re investigated to recognise that he was miss diagnosed with Addisons disease.
This is not unusual either. A family of a young girl in her 20’s also had the inquest of cause of death reopened because they would not accept the diagnosis of sads (sudden adult death syndrome) She too had all of the classic symptoms
of addisons and died from adrenal crisis.
Following this I read a report that many deaths are recorded
as sudden death syndrome because there seems to be no other explanation…
I believe there is an explanation for everything.
They really should be investigated because it is thought a good proportion could be down
to Addisons disease.
This would help prevent this from happening and would help to push for much needed research in this area.
This is a similar story is from over
a decade ago and yet we still have the same problems.
If you compare it to the story I have read today, it shows awareness has not really changed
A 6 year old boy was taken last summer he
was the face of my adrenal insufficiency adrenal insufficiency awareness day campaign.
In December just before Christmas another 2 year old baby girl from the states passed away from adrenal crisis.
early this year a little boy called rowdy died age 11 again from adrenal crisis.
His mom left a heart breaking message on page a week after she had laid him to rest stating the importance of awareness.
another mum told me about how her daughter died because she received the emergency injection to late. She should be 8 years old now but due to the terrible way this disease is managed she is no longer here.
As parents what do we do?
Now if adrenal insufficiency was CONTAGIOUS we would have a cure immediately and EVERYONE would know what it was.
So what happens now?
Will anything anyone ever says or does make a difference?
I reach 26,000 people in one week with my awareness posters I’m doing this on a weekly basis and yet when I speak to people with authority who can help they see me
as a neurotic mother and become defensive about my apparent disrespect for them and their knowledge.
The deaths of these children play on my mind and I thank god everyday that Molly
was finally diagnosed. Its not just children a total of about 8 adults have also died in this time mainly due to emergency care not being given.
If I can learn the basics of how to save someone’s life who has adrenal insufficiency
without ANY medical training why are Dr’s STILL missing this?
The symptoms are not hard to fathom and a simple cortisol test would point someone in the right direction to make a diagnosis.
Until that time though
I have to say please just be your own advocate. Educate everyone around you. Visit the pituitary foundation website …. And print out the free emergency documents. Always carry your emergency medication with you and keep fighting for awareness,
research and new medication.
Please use the hash tag #fightforflightnomoredeaths and let’s please try and stop these unnecessary deaths from happening.