Wednesday 29 February is a once in 1461 days occurrence. The extra day in a leap-year. And it is NZ Rare Disease Day.
Most rare diseases occur much less frequently than leap-days. One in 2000 to one in hundreds of thousands is the pattern for more than 7000 rare diseases. Individually they are rare but together they are common, affecting an estimated 8% of the entire population. If spread evenly that would be one in twelve households affected by a rare disease. If you want to find out some more try here
As some of you are aware one of my children fits this category. He has Cystinosis a rare metabolic condition which effects many of the bodies organs. At the moment the disease is evident in his kidneys and eyes. Along with this he has some secondary conditions...cognative delay being the most significant of them. He has many doctors who help look after his health and he has regular stays in hospital.
Legally my son is disabled.
So these photos are a celebration of him and all the medical professionals who are part of the team looking after him.
(Hayden just after school showing me the stamp he got for being a good boy at the school he attends)
(Another photo of Hayden enjoying boxes, tape and scissors)
(Of course it would not be Hayden if we did not have a photo of him in hospital. This visit was in November with a gastro bug. Three days and four nights in hospital. Here he is ED while blood tests are done so the right hydration and electrolyte plan can be implimented before being put upstairs into a ward.)
I am linking this post to My Little Drummer Boys.
15 comments:
What a lovely dedication!
Give a boy a box, scissors and tape and they'll make the most amazing things, it's so wonderful!
I hope 2012 means less hospital stays.
xxx
Nice pictures of hayden, must fight hard. I wish him well. Greetings.
Wonderful photos for such a special boy and cause.
This is a beautiful collection of photos for a gorgeous boy, Tamara. I can see just how special he is.
Great pics. Kids are such troopers, they really put up with more than they deserve sometimes x
Well, create awareness you did Tamara.
Until now, I'd never heard of International Rare Disease Day, nor had I heard of Cystinosis.
All the best to Hayden, and to you!
Thank you for sharing your story - I had not heard of Cystinosis. It must be hard seeing him in hospital - I hope he stays well in 2012. x
Such a handsome boy. All the best.
Good idea having Rare Disease Day, I haven't heard of it before. Way to raise awareness, well done! Thank you for sharing photos of your precious darling. xC
I'm not sure we have a day like that here - but what a perfect day to remind people about those rare diseases
Hello there, great to raise awareness of rare conditions. Have you heard of the UK group 'Contact A Family' a friedn of mine, in fact my fairy godmother works for them, great website.
Here I sit with my son who has learning issues, autism spectrum, language disorder, helping with homework. It's all a long road, but plod along it we must.
I love this first photo, love the missing tooth and love the proud look!
Thanks for sharing this with us. I'm in so much awe of parents who have special needs to adjust to - as if parenting isn't already hard enough at times. Wishing you all well.
Its amazing what they will make with cardboard, scissors and sticky tape! Our boys love the boxes that toys come in :)
We have a Hayden - who is now in the navy..they grow so quickly.
Heres to a 2012 - with lots of healthy days/nights and lot less hospital stays xxx
What a special lad you have Tamara- he looks like he is having fun creating .
I hope he rises to his full potential with his amazing mum to help him.
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