In April 1991 my whole family was rocked by the news that my gorgeous blue eyed blond nephew, Fraser (Fraz), who was just 10 years old at the time, was diagnosed with Freidreich’s Ataxia (FA).  FA is a crippling genetic neurological degenerative disease of the central nervous system, a disease rather like Multiple Sclerosis with no remission, which usually reveals itself in apparently healthy children between the ages of 3 and 15.  There is currently no cure and no-one has ever recovered.

Believe it or not, worse news was still to come as his cute little sister, Rebecca (Bex), who was 6 had it too. 

In the early days it was soul destroying having to watch his parents, Deirdre and Graham, cope and come to terms with the devastating news that both their children were destined to live their lives in wheelchairs. Although you try to be there, it’s one of life’s hard lessons to realise how powerless and incapable you are to alter what’s happening to your loved ones.  As a close and tight knit family, it’s had a ripple effect of consequences that have been broad and affected even my own path in life.

As for Fraz and Bex, they are both now wheelchair bound, yet despite having some of their potential, experiences and achievements stolen from their grasp, they have both blossomed into two wonderful, grounded and gifted human beings.  They’ve both gone to University, Fraz completed his Masters, and Bex is now studying law after achieving her degree in Psychology. To say how much I admire them and how proud I am of both of them seems grossly inadequate.

Both Deirdre and Graham over the years have not just admirably but successfully set about raising funds for FA with charity luncheons with the likes of Maureen Lipman and bike rides in York, the Isle of Arran, Dublin and Belgium.  They have raised a staggering £750,000!  Not a small or easy feat, which was rightly recognised in 2010 when Graham attended the Palace to receive his MBE for charitable work. Very hard earned and deserved!

Graham's on to his 23rd!!! Big Bad Bike Ride and we are all hoping that this year’s latest FA fundraising event on the 13 September 2014 will help Graham get closer to his target of £1,000,000.  As a self confessed non-athlete or fitto I’ve crazily committed myself, along with 500 or so other riders, to cycle 70 MILES - in ONE DAY around the hills and valleys of Yorkshire!  As a non-government funded charity, it really is important to raise as much awareness and money to bring relief from this frightening disease that little bit closer.  Medical science does move on and the Kennedy clan was blessed by the safe and FA free arrival of Sophie and then Lucy (both now at University) who are two shining and beautiful gifts of research as well as fellow bike riders again this year.

Please be generous and help me help all FA sufferers and their families to find a cure. 

In anticipation, thank you for your support. 

Gillian

PS  Donating to this site is very simple, fast and totally secure. It is also the most efficient way to sponsor me and Ataxia will receive your money faster.  If you are a UK tax payer, an extra 28% in tax will be added to your gift at no cost to you