What would you do?

So it was rare disease day on Monday feb the 28th .
 I'd written Molly's story down in its entirety for the first time ever and it had 1000,s of reads. I wasn't expecting that, i've lived with this heart pain for 17 years, really its just normal for me to spend my life feeling scared witless because my child has been / is so continually poorly.
 I was surprised by the amount of empathy people felt and i like that, plus it was good therapy id never really talked about it in that depth before, albeit to myself.
So many people messaged me to just tell me how they couldn't believe what we have all gone through as a family and especially to tell me what an amazing child I had.
 I felt more justified in my awareness campaign the more these words came through. 
I've never complained you see. About anything, I mean  I have my tantrums like everyone else but they are short lived. 
It may sound silly to say I feel I have to justify my actions when you read the rest of this, but seriously I'd justify 
myself to a pot hole in the road if It looked at me funny. 

It was last Sunday night that I thought that is it I cannot accept this any longer
 I cried for someone I never knew that night because this was the reason, she was the reason I'm working so hard to stop this thing, why should a parent have to lose their child because the world will not listen.
Rowdy was his name he was 13 and his mum left a message on my awareness page to tell people the importance of raising awareness here is her heart breaking message.

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!

How can anyone possibly not be upset by that? 
This is now my world
I have been plunged in to this world where parents walk on tightropes, patients are fearful by the lack of awareness of dr's. and the refusal of life saving medication on a regular basis
Its like a weird underground world where it is acceptable for children and adults to die because the treatments for this disorder are 50 years old. Medication consists of chopping up  10mg tablets and taking bits of it throughout the day (scientific hey?).... this is supposedly acceptable cortisone (steroid) replacement, without this treatment the patient would literally die. who knows if the half or quarter taken in the morning was enough to cover a normal level or indeed any stressful situation until the next tablet time?, conventional hydrocortisone replacement cannot reproduce the circadian rhythm  which is natural to our bodies 
   so patients are under- or over-replaced. This explains why patients with adrenal insufficiency suffer from a poor health-related quality of life, with an increased mortality risk, i see this every day Molly is poorly every day i see posts every day from people who feel absolutely awful, and yet when i say to anyone who should know about these things, should she be this unwell? they say NO shes on adequate replacement she should be fine, These are the medical specialists who are looking after her , at high doses, say one is taking too much it can cause cardiovascular risk factors and defects, Cushings disease bone thinning problems and other complications. 
  Of course there is a pump which exists which releases cortisone in to the body by way of a more natural  circadian rhythm  but very few people have access to it. One friend of mine who has addisons asked about the pump and her dr laughed at her saying 'pha you wont see that in your life time' i mean wtf ? i know they are currently doing trials but Jesus they need to sort this out now. Slow release drugs also exist but again no one has access to them and they are poo pooed by pump experts... work that out :/

Currently we have lost 8 people including 4 children just in the short time i have known that this condition exists. Mainly due to them not being given the emergency treatment in time to prevent serious damage, a beautiful 2 year old girl just before Christmas another lady not long after and now we learn of poor Rowdy all taken to soon because the world will not listen or do anything about the outdated ridiculous medication and awareness of this thing.
 Nice have stated in their guidelines following the death of a teenager that this replacement dose is not acceptable
And yet nothing has changed, i have read coroners reports calling for safety watches one even stated that this is easy to eliminate if dr's are aware of it
Some families have even gone back to the coroner to ask that their loved ones death is looked in to again because they would not accept the  cause of death as being unexplained these such reports have then been re recorded as addisons disease death by adrenal crisis.
This is bad enough never mind the other things like no international protocol for emergency.
I cannot even start on how schools / employers manage this THAT is a whole new and damning article of which i will write with fury!
 When Molly was diagnosed, i sat there holding my hand out for an information pack,  this is a life threatening disease surely that is important, shes my child, ive just learnt she could die within 30 minutes of a trauma without an injection.
 We received nothing but an a4 sheet of paper  telling us when to stress dose and when to administer the emergency injection.
no medical band, no counselling, no explanation of what the condition is, no car warning stickers, no information on support groups nothing . 
Of course we had dvd's a choice of devices and many shiny leaflets on the growth hormone medication she was to also have, but then that's a multi million pound industry, We even had our own growth hormone nurse who comes to our house ! bargain!!!
 The thing, contraption what ever you want to call it which was to actually save her life was not even in its own box .... ffs 
A glass vial with no lid (you break the glass with your hands), a couple of syringes and a few needles..... have that  wtf?

So  i cannot shout anymore than i am ive now dedicated everything in my brain to push for awareness, research and better medications, these things need addressing by the 21st century and NOW.
 Currently we (my new family of parents and sufferers) are living in a world of feeling very unwell most of the time, 2 parents have a tiny 12lb baby in crisis in the hospital as we speak with drs trying to save him. A young beautiful lady whos mum was preparing her funeral just pulling through after months of her being in icu she has been brain damaged and in a coma because she was not given her injection on time and now poor Rowdy the little boy who was cared for as much is humanly possible by a worried mother he is the latest of a very long line of people who have needlessly died because this condition is not popular enough to be considered important... Or is it? More and more people are being diagnosed with this due to receiving to much steroid medication, whether that be in an asthma inhaler or a different form.
And i'm scared that's it!  That's why i am doing this!  
What mother wouldn't be?
please learn more about our fight for flight here 

my beautiful girl


08.04.2021 12:46

Janet Butler

My Learning Disabled Son is now back home with us after being in a supported living home for 8 years. He is back because of the restrictions of Covid, but I am not letting him go back. xx