Thanks for taking the time to visit my JustGiving page.

I have setup this fundraising page in my wife Katie’s memory to raise awareness and money in support of the Ehlers-Danlos Syndrome (EDS) UK Support Charity.

Katie suddenly and unexpectedly passed away on the 14th August 2014 at the age of 33, just one week after giving birth to our first daughter Megan Katie Rose.

It transpires that Katie unknowingly suffered from Vascular EDS (VEDS), the most serious form of EDS where arteries, blood vessels and organs are at risk of rupture even from minor trauma, causing reduced life expectancy.

In Katie’s case, the additional pressure placed on the body by childbirth caused a dissection of a major artery that could not be controlled.

Prior to her death, Katie lived a normal life where she had travelled to many parts of the world, had undertaken parachute jumping, wakeboarding, white water rafting and been an air hostess and a police officer. All of this was achieved with no signs of illness, proving EDS really can be invisible.

VEDS unfortunately has potential implications for blood relatives, resulting in the need for  family members to be tested for the syndrome. In Megan’s case, the probability of her having VEDS is 1 in 2.

As such further awareness, research and education of this rare syndrome is needed as no cure currently exists.

Further information for those interested in learning more about EDS can be found at the link below;

http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx

http://www.ehlersdanlosnetwork.org/vascular.html

Finally, I'd just like to thank you all for your support, love and well wishes during the last few months.

Thanks

Tim

 

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