Sunday, February 27, 2011

Rare but Equal - 28th Feb 2011 - Rare Disease Day

"February 28th 2011 will mark the fourth International Rare Disease Day coordinated by EURORDIS and organised with rare disease national alliances in 25 countries. On that day hundreds of patient organisations from more than 40 countries worldwide will be organising awareness-raising activities and converging around the slogan “Rare but Equal”.
Hundreds of patient groups and their partners, coordinated by national alliances at the country level, are planning a multitude of events to draw attention to rare diseases and the millions of people who are affected by them. Awareness-raising activities are being planned across Europe, all the way to Russia, Georgia and Armenia, as well as in the US, Canada and as far as Australia, New Zealand, China and Japan!"
Around the world there are people that suffer from a rare disease, and with rare disease comes a difficulty not normally found with other disease; Don't get me wrong, I understand the difficulties and problems with diseases that are already known, but the main added problem that come with a rare disease is that sufferers often have to fight hard to even understand their problem, let alone getting anyone else to understand what they are going through, these people are often getting very ill, and in many cases are dying.

And that includes Children.

My Niece, Lyndsay and her former husband Andrew wanted to know why Ben was not doing well in school, why was he ill? And why couldn't they get an answer?

Like other people around the world they fought a long and hard struggle to get a definition of the illness that was affecting their little boy.

And like all parents would, they wished that someone could make him better.

Sadly, this wish will never come true

On April 29th 2008, when Ben was 7 years old, his Mum and Dad were given the news that their son had a degenerative disease known as Niemann Pick Type C, often know as 'Early Childhood Alzheimer's, a degenerative disease that leads to dementia, and then death.

On that day the Lyndsay and Andrew faced the devastating news that their Son would not live past 21.

Time goes by for us all, we get older, things change, Lyndsay and Andrew are no longer together*, except for the children, which of course, includes Ben.

And time too, affects Ben; In this Daily Mail report you see Ben grinning while he climbs on the table, in this BBC Points West report you see him unable to carry his own weight, yet still playing (and grinning).

Now he can still smile, but is now fed via a tube, and now completely immobile.


Awareness may help those with similar diseases get recognition, donations will help scientific development.

Whatever you can do to raise awareness is going to help.

*I think it's worth mentioning that people are still people, having a disabled child doesn't stop that, but one thing that has come from this break up is that Lyndsay and Andrew still work together for all the children, and they now both have a happy relationship with new partners, who are also involved with the whole family. My hat is off to them both.


Lyndsay ( bens mum) said...

Thankyou x
Benbear send snuggles xx

yeomanpip said...

And snuggles back to Benbear xx