Although most people with epilepsy live long and healthy lives, epilepsy is one of the top-ten causes of early death. At SUDEP Action, we focus our efforts on providing tools to help keep people safe and on the priorities that bereaved families tell us are important: To prevent deaths; To be supported; To be involved.

I came to write about why I’m raising money for this charity and I found the fundraising page for my last charity event. It has been 10 years since I did my wingwalk - another 10 years has passed, so its time to do something crazy again in the hope people will sponsor me so we can raise lots of money for a worthy cause.

I don't do that much work personally for charity but that is because there is only one charity that stole my heart.

On December 23rd 2006 my youngest sister was ripped out or my family's lives forever, here is our story.

It was like any other Christmas, excitement was in the air, everyone was dashing around buying food, last minute presents, going out with friends...... until that morning when the whole world melted away. 'Sudden Unexplained Death' perfectly named if you ask me, simply explained to us as an adult's version of 'Cot Death' I had never heard of it before, but as my parent have come to realise through conferences they attend - thousands suffer the consequences every day. Due to my sister having had a fit it the previous 18 months the coroner announced the cause of death as 'Sudden Unexplained Death in Epilespy' (SUDEP).

This is the charity I wish to raise money for by doing a Paraglide on the 19 September. 10 years ago I did a Wingwalk, 15 years ago I did a skydive in her memory, this time I wanted to do something I know she would've been crazy enough to do with me! It had to be on the same scale as a Wingwalk and a skydive because I want it to be worth sponsoring!

My sister was offered medication for her epilepsy but she turned it down as she had just started university and wanted to enjoy the university experience and not have the drugs interfering with her studies. If she had been more aware of SUDEP would she have taken the medication and enjoyed more of the university experience and more of a life than she had hoped for? We will never know - but I would like to help somebody else's family understand and help those families that have been through the loss of someone who didn't deserve to go.

Her name was Kathryn, she was truly beautiful inside and out, she was intelligent, funny and quirky in a special Treadwell kind of way that made her lovable. Her funeral was breath-taking; the amount of people that attended made your heart ache. The number of lives she touched for such a young age I am proud to be her sister. She wanted to be a librarian or a historian and I have no doubt she would have achieved her goal - she was both ambitious and determined, if she only would've had the chance.

Twenty years on and I still miss her, I wish she had met my children, that she knew me today and the person i had become. My heart ache's every time I let myself think about her and I feel it hurting writing this for you now.

They say no parent should have to bury a child, no big sister should have to bury one who's younger - no one should not have the chance to say goodbye to their best friend.

It will be 20 years this December, two decades without such a shining star - sometimes I wonder how there has ever been light since she was taken.

Luckily there are charities such as SUDEP Action to help people with their loss; they help you find your way again. SUDEP Action have helped my family and I want them to be able to help others too.

Terrible, tragic things happen every day to everyone around us but sometimes it is too hard to share - today I have shared with you the worst time in my life so you will help me share the facts about SUDEP to those who need it most.

I may have come to you before asking for sponsorship but I hope you will donate again for us and for all the other families who need SUDEP Action's help.

Natalie xxxx

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