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okarol
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Photo is Jenna - after Disneyland - 1988

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« on: January 03, 2009, 11:22:11 PM »

Obituary: Kidney donor later sought a transplant himself
 
Father's gift to son helped the toddler survive and leaves an inspiring legacy
 
By Katherine Dedyna December 5, 2008

To say that Daniel Twinn lives on in his son Kurtis somehow doesn't cover the emotional and physical bond the two share.

The Langford father died recently of a rare form of cancer without ever finding a bone marrow match. But the kidney he donated to save his son's life 13 years ago is still going strong.

"It was a long battle he fought really hard, but unfortunately, there wasn't a match for (Dan)," his wife Linda says. But Dan's kidney was a perfect match for their now 16-year-old son Kurtis: "I just think about that a lot."

Even if the match was found, the chances of it going to a man with only one kidney were not good. For a long time, the family thought he would be in remission, like his mother. Instead, his cancer progressed aggressively and he died recently at 50, a shadow of his formerly burly, athletic self.

In 2003, Twinn was diagnosed with Richter's Syndrome, which complicates the condition of people with chronic lymphocytic leukemia.

"He just couldn't seem to stay in remission -- he had chemotherapy after chemo-therapy," his sister Tina Nienaber says.

Twinn never hesitated to give up one of his kidneys for Kurtis. The toddler was near death in 1995 due to kidney failure.

"His words were 'Any normal father would do it for their son,'" says Linda, who was married to him for 23 years.

Kurtis was born with two kidneys; one failed at four months and the other never worked at all.

The family waited a year and a half for a match for a donor, but no luck. For most of his first three years, Kurtis was fed a nutritional supplement through a tube and received daily dialysis -- the first time such a machine was in a home, not a hospital.

"He was hooked up constantly," says Dan's sister. "He was starting to get (renal) rickets and not able to walk."

But his progress was quick after that.

Twinn's decision gave Saanich teacher Cean Legere the courage and confidence to donate one of her kidneys to her husband. Norm Legere played on a ball team with Twinn.

Twinn was much more than a kidney donor. He was a friend, athlete, loving brother to Todd and carpet-layer -- jokingly describing himself as a floor-laying technician.

He and best friend Dan Conners worked together on a large logo on the carpet in the Victoria Salmon Kings dressing room, spending 100 hours on it.

"He was so proud of it," Conners says. The two friends met when they were both in their 20s.

"They called us 'double Dans," he recalls of his friend of 30 years.

Athletics led him to his long second marriage. He and Linda hit it off instantly. "We both were married one year, and both separated before we met each other. He came to one of my ball games -- that was that," she says.

They were a case of opposites attract -- he was like a flowing river; she was like lightning. She loved the way he treated her two-year-old daughter, Krystle, from her first marriage like his own toddler, Tanya. They had two children of their own, Karlee and Kurtis.

Having kids brought out the kid in him. He liked to lie in wait for them on the floor of a hallway and when one came out a door unawares, grab their ankles to give them a scare.

Dan was a lifelong prankster, and Nienaber remembers spending months working on a gigantic jigsaw puzzle when she was 12.

Finally at the end, she was dismayed to be missing a piece. And immediately knew to run out of her room to find a grinning Dan holding the 'missing' piece. "He'd been waiting months for this joke to happen," she recalls.

He never wanted negativity around him. His favourite saying was, "Don't worry about it. It always works out."

He had "a huge heart," says Don Moore, who got to know him when he coached Kurtis in bowling at Mayfair Lanes.

"He was a generally happy guy," Moore recalls.

"I never saw him angry, ever, which is very rare these days. No matter what his kids did, he was there, cheering them on all the time."

But he and Kurtis were "like Siamese twins -- it was a great relationship, absolutely amazing," Moore says.

As well, he was "an awesome athlete," Conners says.

Twinn was once a star goaltender in ball hockey and took the Carlton Club Bruins to a provincial championship. The duo then helped found the Tally-Ho Blue Js slo-pitch team. He was star at over-40 slo-pitch, playing third base, ending up with the Foggers, which even last year he helped lead to a provincial championship, Conners says.

Conners still wears an armband that reads "Relentless" in memory of Twinn.

"He left us way too early."

Daniel David Twinn was born in Halifax on July 15, 1958, and died at Royal Jubilee Hospital on Oct. 30, 2008.

kdedyna@tc.canwest.com

- - -

Island Lives is a weekly series celebrating the lives of Island people who have died recently. The series focuses not on the famous, but on our neighbours who have led interesting lives or made a difference in their communities. If you know of someone whose life should be celebrated, let us know by e-mail features@tc.canwest.com or by mail at 2621 Douglas St., Victoria, B.C., V8T 4M2.

http://www.timescolonist.com/news/Obituary+Kidney+donor+later+sought+transplant+himself/1034819/story.html
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
monrein
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Might as well smile

« Reply #1 on: January 04, 2009, 05:48:47 AM »

The son of a friend of mine at my gym donated bone marrow anonymously to a young man in the US, last year.  He flew down, donated, recuperated and flew back home without ever meeting the recipient.  He did it because he was a match and felt it was some good he could do in the world.  The recipient was in his early twenties just like my friend's son.  Living donors rock big time.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
kitkatz
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« Reply #2 on: January 04, 2009, 12:58:27 PM »

God bless that father and son!
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Take it one day, one hour, one minute, one second at a time.

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boxman55
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« Reply #3 on: January 04, 2009, 01:04:54 PM »

I love stuff like that story  :thumbup; ...Boxman
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"Be the change you wished to be"
Started Hemodialysis 8/14/06
Lost lower right leg 5/16/08 due to Diabetes
Sister was denied donation to me for medical reasons 1/2008
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