Sunday, 30 September 2007

raising a child with a disability - whats it like ?

This is a piece of writing by a lady named, Emily Perl Kingsley. Emily gave birth to a boy with down syndrome in 1974. With her husband Charles, they became activists, educating the public and developing resources to help children with special needs fulfill their full potential. Emily wrote "Welcome to Holland" in 1987.

by Emily Perl Kingsley.
When you`re going to have a baby, it`s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Its all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says "welcome to Holland".
"Holland ?!?" you say. "what do you mean Holland ?? I signed up for Italy ! I`m supposed to be in Italy. All my life i have dreamed of going to Italy !"
But there`s been a change in the flight plan. They`ve landed in Holland and there you must stay.
The important thing is that they haven`t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Its just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people who you would never have met.
It`s just a different place. It`s slower paced than Italy. Less flashy than Italy.But after you have been there for a while and you catch your breath, you look around...... and you begin to notice that Holland has windmills...... and Holland has Tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy..... and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say "yes, thats were i was supposed to go. That`s what i had planned"
And the pain of that will never, ever, ever,ever go away...... because the loss of that dream is a very very significant loss.
But...... if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Wednesday, 26 September 2007

thank you - BIKE ANIMAL !!

I want to say the biggest of thank you`s to all at the BIKE ANIMAL website on behalf of myself and the Fragile X syndrome charity. Jenna and the gang have written a superb article on the Fragile X Pedition, capturing its essence.
BIKE ANIMAL is a passionate breath of fresh air to all the biking family. all aspects of motorcycling are captured on the site, including all the latest news in the racing world. They are this seasons title sponsor of Honda`s racing satillite team , with the talented Leon Camier in the seat fighting for the British Superbike title. Top luck leon !!..... On the site you grab road safety advice, submit your bike and tour reviews, vote for bike friendly accomodation, enter loads of compititions, list your bike and accessories for sale free of charge, get essential information relating to insurance, legal support and rider training, plus more , more & more !. the forgotton 2 wheel sport of speedway is covered on Bike Animal also. They are an ambitious lot who are striving for an interactive place catering for us out there riders , who are actually on our side !
Thank you BIKE ANIMAL !!
click and clock the Bike Animal link on the right.

Saturday, 15 September 2007


Heres a photo of sian & her uncle me. Sian is 14 years old. She is a beautiful, affectionate, inquisitive, spontaneous, sunshine summer days bringing member of my family, with the natural ability to have me mesmerized for hours, sometimes leaving me with the feeling that my ribs are slowly squeezing my heart dry, not to mention an incredible high speed knack for completing jigsaw puzzles. My sister susans child. She has the full affects of fragile X Syndrome.
Sian was developing as any other baby would be until she was 20 months old, when Susan started to notice her attention span was leaving and her developed skills were disappearing. The Doctors who studied Sian, at first thought she was showing signs of autism, but then at the age of 3 and a half she was diagnosed with Fragile X Syndrome. We all thought out loudly " Fragile whattttt !?" , as does everyone i meet.

Fragile X Syndrome is an inherited cause of mental disability. Us Humans have chromosomes, 2 of which are sex chromosomes. in males these chromosomes are X and Y, in females X and X. Chromosomes are bundles of genes that are passed down through family generations. The Fragile X gene is called FMR1. Fragile X attacks the X choromsome, which over generations mutates, so the cycle of DNA in genes , grows, making the mutation unstable leading to full fragile X syndrome. Because females have X and X chromosomes and males X and Y, it has been said that if females have one "fragile" X she also has a "good" one, which can compensate for the fragile one, so probably will not suffer the full effects of fragile X . This is not the case with our Sian, she has FULL fragile X syndrome, she is seriously mentaly disabled.

For a full understanding and furthur information please click and clock the links i have displayed on the right.

Saturday, 1 September 2007

i am not alone

Superb news ! i shall not ride alone, i have an intrepid, fearless, life and laughter lover joining me for the trip. Pete Peil the corageous coloradian. I met pete this year, 07, during the peru / chile excursion. Here in the photo he can be seen absorbing information from the gargantuan blue skies above the sinuous peruvian pan americana, or just grabbing a kip inbetween wrestling 100km rides, only he knows. I am chuffed that he`s joining me. There is a large part of me that wants to do the trip on my own, but with friend i think more doors and highways will open and there isnt better than petes company. Hes an experienced rider especialy at high altitudes and on dirt. A nurse by trade, who happened to be there for my moments of "arghhhhhhhhhhhhh" in peru / chile. A very amicable chap who is well up for a challenge, new experience and laughs along the way. Good on ya pete !