Tuesday, 28 February 2012

Wordless Wednesday 29 February

My post today is my part to create just a little awareness of International Rare Disease Day. 

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.

Did I tell you...

Did I tell you that there is a budding flautist in our house.  My tone deaf daughter has to learn an instrument for the next 4 years at school.  I suggest she might be best to learn a untuned percussion instrument.  School picked the flute for her to learn.

At least after two weeks she looks the part but no notes to be heard.  Plenty of wind though.