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People living with chronic illnesses and diseases are holding on to hope - for a cure.

That may not sound like news to you, but it feels like some days i want to scream it from the roof tops.

How will a cure be found? by enough people caring enough to RAISE AWARENESS, SUPPORT and ADVOCATE for one.

Our family has children with Severe Haemophilia A. They may look like your children, but they endure venous access on a regular basis. The comment i love "oh they get used to it don't they" ......... well actually - have you ever stuck your baby in search of a vein? The closest i imagine you can get to that is a rare hospital visit or vaccination at the GP - which is bad enough for any child.
Do you honestly think a mother or father ever gets used to accessing their own child with a needle? Can you imagine the feeling inside before treatment? praying it all goes well?
Do you think you would ever get used to being accessed with a needle on a daily basis?  Enduring long suffering - with Gods grace,  yes!! but getting used to it? .... It never gets 'nice'.

Chronic diseases are called chronic for a reason - here is the definition:

 chron·ic  (krnk)

adj.

1. Of long duration; continuing:

2. Lasting for a long period of time or marked by frequent recurrence, as certain diseases

3. Subject to a habit or pattern of behavior for a long time

 

They do not simply 'go away' or 'get better'. Certainly we learn to live with the condition, for us we believe all things will work out for good. but that does not mean we should be quiet and just get on with it. I don't often talk about Haemophilia, generally because peoples reactions can be hurtful, they can down play it when in reality they simply lack knowledge, information, or education of the disease.

 

This is where raising awareness is so important. Lets get the facts strait.

 

We hope for a cure.
We hope people will care enough NOW to want to spread the word.
We hope people will not turn their backs or look away, but listen,  and out of compassion be moved to RAISE AWARENESS.

My son has been attending his school for coming up 3 years, i was told i would receive in the post a form to update the protocol for Austin.
 So this form arrives.. i should put a photo on here of it... it is laughable. In fact my husband and i did laugh. we are to name a 'trained first aider' (there was a list to choose from) to administer Austins medication. I am sure any one of the people would have no problem accessing a vein on demand ! LOOOOL
 I am not even sure how to respond to this. Part of me laughs, part of me is confused that it is not tailored to haemophlia after him attending the school for nearly 3 years, i would have thought they might have noticed HOW the meds are given. I think i will reply that i do not give consent for anyone to administer his meds....bit of a pointless protocol - me thinks.

 Probably need to do another 'awareness talk', they may have drifted off at the last one!!

It's not all bad though, we arrived at school one day this week - without the tourniquet, (fail) and asked a teacher to help with access by holding Austins arm, in place of the tourniquet ... in hindsight i hope she was not too freaked out - but a tourniquet has one job, and on that morning - she was it. (as a side note though, sometimes when the tourniquet is released, the vein can 'bounce' and the needle slip out, with holding the upper arm on little ones, you can gently release, and it can be quite a lot easier.)

Going back to the point of this bloggitty blog -care for the rare.

A friend of mine has a child with aprexia of speech, and we were talking today, (God-  i am thankful to have a friend with a special needs kiddo) and often within Christian groups there is a tendency to, in a way - ignore a special need. As if in some way by refusing to acknowledge the lack of a physical healing will somehow 'bring about' a physical healing.

It is on the strength and in the grace of Christ that we are strong. For it is in weakness that God shows his strength - through us. Which is interesting because it is in your power that your weakness is also shown.
But we are only human, and it really hurts when - for once,  we stand up and say "hey, look over here, support us, walk in these shoes" - and we are shut down.
It hurts because we see what you don't. We endure what you do not, and we cling to Christ in way you (hopefully) will never know.

We hope for a cure, and we hope you will too. Rare diseases are rare because not many people are affected with them, that is what makes them rare. (just to clarify!) This also means that to raise awareness we need people to stand with us, we need people to stand with us NOW. Who are not affected personally, so that TOGETHER, our voice can be heard.


You can choose to hear us, you can choose to ignore us. But we are here, and without you, and people like you, getting on board, we will remain rare. We will remain unheard in our communities.

My son wanted to raise awareness (not fund raise) in his school, to see his school dressed in red in support and in acceptance, would have been amazing for him. However in a turn of events, a different school, that we run a breakfast club at each morning (run by an atheist principal no less! ) is open to raising awareness instead. The mind boggles, at how that turned out, and yet i am constantly surprised at who shows great kindness in great need, and who does not. It is often the people we least expect. Which does go to show you cannot tell a book by its cover.

28th feb - rare disease day - If we do not talk about haemophilia, we will not raise awareness, which is the first step for a cure. Please talk about it. Please raise awareness, please take that first step.

Our family will be wearing RED (the colour of blood !!) on the day, join us and RAISE AWARENESS - Severe Haemophilia A ain't no joke !!!!!

please share if you care!!!!

(and if you dare)

P.S. - yes Fauna - i know you care xx

a bit of poetry,  at the end there...