A couple AVM news stuff.

‘I can’t wait to get back to work’

8:50am Monday 29th September 2008

Comments (0) Have your say »

By Hayley Korn »

THREE years after her fight to save her husband’s life, a Kings Langley woman has spoken frankly of her battle to stay strong and keep her family together.

Julia Nash, of Water Lane, has been through a rollercoaster ride of emotions since her husband Pete was first diagnosed with a large Arteriovenous Malformation (AVM), or tangle of abnormal blood vessels in his brain in 2004.

Pete, a father of three boys, had been suffering with epilepsy, loss of memory and headaches and was left unable to work, drive or do any of the sports he loved.

According to Pete, if left alone, the AVM could have burst at any time, but West Hertfordshire Primary Care Trust turned down the funding to do the operation that would remove the AVM, because it considered the procedure to be too risky.

The whole village and wider community began helping to raise the £70,000 to fund the operation that would eventually save Pete’s life.

But the force behind the effort was Pete’s wife, Julia.

She fought with the Government to get laws changed, and the case ended up being discussed in the House of Lords.

Julia, 43, said: “Now, although Pete is thankfully almost cured, we are left in a complete financial mess, and whereas before I did not really think about it, I was running around to hospital appointments and focusing on Pete, now, we are hanging on to our house for dear life.

“Coping financially is our biggest strain.”

Julia, whose art career has recently taken off with exhibitions around Watford, has started work on a new book, due to be published in December.

Julia said: “When the Sky documentary came out it was 45 minutes long.

“There is so much people were not able to see from watching the documentary because there was not the airtime to show it.

“But in my book I give a frank account of how Pete’s illness and the fight with the Government affected us, how it almost destroyed us as a family and how I nearly had a breakdown.”

Years later, Pete, 40, has just been given his driving licence back and can start working again.

He said: “I am so looking forward to starting work again, it is nerve-wracking after three years but I cannot wait.

“I am also really excited about running the Abbots Langley Tough Ten and should get round much quicker this year.”

Julia said that last year, she ran hand-in-hand with Pete during the Tough Ten, the event that raised a considerable amount of money for his cause, Pete’s Fund.

But this year, she said, she is looking forward to seeing him run off ahead of her.

The couple are looking for businesses for sponsorship and are hoping for more runners to join them.

Julia, who is now helping other AVM sufferers and their families, through her Facebook page, added: “It keeps me going.

“There have been many times during these three years when I have felt like running away, but then I kept saying to myself, come on Julia, you are a strong girl, but sometimes you get to the point where you have had enough of fighting and trying to keep hold of what is rightfully yours.

“Other couples may have split up but we have stayed strong and are lucky we had a close family around us when things got very bad.”

The Abbots Langley Tough Ten is on Sunday, October 5. For more information telephone race secretary Pat Waterton on 01923 263840.

from...

-------------------------

The Aneurysm and AVM Foundation and
Dakota Lane Johnston

We're less than a month away from the chili cook-off. And I have to tell you that I'm extremely excited - I think we're going to have a big turn out.

Dakota will be on everyone's mind this day. We all know that he was taken too soon but he will always be with us.

If you would like to make a donation in Dakota's name to The Aneurysm and AVM Foundation, please click here. There will also be an opportunity on the day of the cook-off to make a contribution. This is such a wonderful way for us to honor Dakota and to contribute to the continued research of aneurysm and AVM (Arterio-Venous Malformation).

We look forward to seeing you there.

that one is from here

these are from Amazon'