ATAXIA BUNGEE JUMP .wmv

Comment

Comment by Michael Ward on April 3, 2011 at 9:53am

Nick  I really feel for you and your family. It breaks my heart to see a young child hit with Ataxia. At least I was 47 when thing went south. Now at 52 my wife always tells me that at least I have had a full life.

With all the medical advancements I hope they can find a cure in your daughters life time. UCLA Medical Center in Los Angeles are doing some cutting edge research.  am very fortunate to have Dr. Susan Perlman looking after my case. In a couple of more years I hope be in the clinical trials. Being involved in sites like this can help all of us be aware of the advances concerning SCA. I would love to see a cure for the next generation. In the meantime all we can do is try and slow this train down!

Kind regards,

michael

Comment by John "JC" Colyer on April 3, 2011 at 9:04am

Very Inspirational, thanks for sharing!

Comment by Nick Ormsby on April 3, 2011 at 9:00am

Hi Michael.

I am so sorry for the misunderstanding , I think even though we both speak English there is still a slight language barrier. I will be perfectly honest on numerous occasions watching the video it has made me cry as it was such an emotional day, I have often wondered if the editing explaining Millie's condition is a bit too much ('over the top') to get the message across myself. Sometimes I feel when trying to raise awareness If we go to far people switch off as they do not want to hear the full reality of this condition. I took your comment completely out of context and for that I appologize most heartedly.

Kind Regards

Nick 

 

Comment by Michael Ward on April 3, 2011 at 8:50am

Hi Nick. I was an extreme athletic before I became an Ataxia Patient. Been a surfer, skier, cyclist, golfer  my whole life. I grew up in Southern California so my English is full of sayings that are relevant for the West Coast of the USA however loose their meaning according to the Location of the English speaker.

To Say it was "Over the Top" where I come from is a completment for courage. I was moved by the the display of courage. I meant it as a complement. Forgive me for my ignorance. I personally loved her video and my heart skipped a beat when it looked to me the she was going to hit the roof below.

I only want the best for others. My daugther is 14 and I pray that she doesn't inhert Ataxia as I have.

People look at me like I'm on Crystal Meth however I maintain  a postive attidute despite peoples inorances. Hopefull Nick you realize I meant no harm in saying "Over the Top", Its only to say second effort! I meant no harm.

Kind regards,

michael

Huntington Beach, California

Comment by Nick Ormsby on April 3, 2011 at 7:05am

Millie's cardiomyapathy has been classed as severe at the age of 8.Life expectancy 25-30 . She has had spinal surgery , preventative only not corrective as they could not use spinal cord monitoring because of her Freidreich Ataxia. Millie's mom was petrified doing the bungee Jump, she was personally sponsored over £1000 . 200ft. And you comment ' Over the top' .. Check out Millie's website, read a bit about her , her time in hospital all written from a childs perspective then lets see if trying to raise awareness and funds for my daughter and others with Ataxia can really be deemed as 'over the top'.

http://www.milliemaesworld.co.uk

Comment by Michael Ward on April 3, 2011 at 12:29am

Over the top!

Comment by Sarah M. Bosse on April 2, 2011 at 8:35pm

oh man, I'd puke!!!  LOOK OUT BELOW!!!  :P

Comment by Nick Ormsby on March 28, 2011 at 10:13am

please share this video. Thankyou.