Yesterday, KSL and the Salt Lake Tribune reported on the fifteenth anniversary of the Kurt Oscarson Children’s Organ Transplant Fund.  This fund was created in response to the challenges two Utah families faced when their children needed liver transplants.  Both families were struggling to raise enough money to cover the transplants.  A fifth grade class at Crescent Elementary in Sandy decided to help.  They contacted State Representative, Kurt Oscarson and ultimately this fund was created.

At a press conference, both of the mothers involved spoke about what it was like to face the challenges of a very sick child and lack of finances.  At the time, pediatric liver transplants were not done in Utah, so they both needed to travel to Wisconsin.  Their children, now adults, then spoke.

Talysa was only ten months old when she received her liver transplant and she says she feels lucky that she doesn’t remember the transplant or how sick she became.  She has met others who remember how hard and scary it is to need a transplant.  It has been 20 years since her transplant and she is doing great.  She expressed gratitude to her family, neighbors and everyone who makes this fund work.

Caleb was four years old when he had his transplant, but says he doesn’t remember much more about it than Talysa remembers about her transplant.  He is now a healthy 23 year old.  His gratitude was evident as he stated, “I’m grateful to the people who were selfless enough to allow themselves to become donors to give someone else a second chance and I wish to express my gratitude to everyone who has made that choice on their driver license.”   

Donations to the Kurt Oscarson Children’s Organ Transplant Fund can be made on your Utah State Tax Return.  Register as a donor at www.yesutah.org.

April, National Donate Life Month, is almost over.  Throughout the month, I have had the opportunity to meet a lot of incredible people and attend some very touching events. 

Two of the people I had the pleasure of meeting were Mike Parke, Funeral Director at the Parke’s Magic Valley Funeral Home, and his wife Catherine.  Mike had a liver transplant in 2008 and says he feels better than he has in 20 years!  He expressed gratitude for the overwhelming support he received from people in his community prior to and following his transplant.  He is now a strong advocate for donation and is looking for ways to make a difference in his community and throughout Idaho. 

I attended a community event at Ogden Regional Hospital where Dr. Wahlstrom and his son Andy spoke about the impact organ donation has played in their lives.  Andy received a kidney from his younger sister, Mallory, several months ago.  Dr. Wahlstrom shared what is was like as a father to watch as two of his children were wheeled in to surgery.  Both Andy and Mallory, who is the current Miss Kaysville-Fruit Heights, are doing well. 

The Wahlstroms were followed by Paul Cardall, concert pianist and heart recipient.  Paul told a little about his heart condition and the disappointments and tragedies his family has faced in the last year.  He has gained a new perspective that has increased his great gratitude toward his donor and their family.  He then played a song he wrote for a baby he met at Primary Children’s Hospital, “Gracie’s Song.”  This beautiful song set the mood for the raising of the Donate Life flag which took place immediately following the speakers.

I also continued to see the need.  I interviewed a teenager on dialysis, met a toddler who needs an intestinal transplant, and spent some time with a woman who needs a new heart.  I hope next April finds these people doing well and ready to celebrate with us.  If you haven’t registered as an organ, eye, and tissue donor, it’s as easy as logging onto http://www.yesutah.org/ and clicking on the big, yellow “Register Now” button.

Written by Alec Rampton – Liver Transplant Patient April 28, 2009

Alec and Megan a few weeks before his transplant

One year to the date after being admitted to the Intermountain Medical Center for a potential Liver Transplant, I was able to compete in and finish the Salt Lake City Marathon.  Despite being severely ill on April 17, 2009, the liver went to another person who was also in desperate need.  I cried with my wife Megan following the news that I wouldn’t receive the liver, but our tears were not tears of sorrow, but tears of joy because we knew that another’s life would be saved through the beautiful process of organ donation.  We also knew that my chance to receive a transplant would come, and come soon.  And it did as the call from my transplant coordinator came in the early hours of April 28, 2009, and after 9 and a half hours of surgery, I received a second chance at life. 

We have always been physically active, so being hindered from sports and the outdoors with a liver disease was extremely difficult and frustrating.  Getting back into physical activity has been such a blessing and a gift for me.  Following the transplant, Megan and I started attacking life together by cycling, golfing, skiing, hiking, and walking our overly energetic dog Bode.  I felt better every day following surgery, and thoughts of pursuing a long-time goal of mine to run a marathon were brewing.  I made the decision to run the Salt Lake Marathon around Thanksgiving of 2009.  I began training right after Christmas.  As I ran almost every day, I felt so empowered by all of the people that had supported me during my illness through recovery stages, especially by my donor who remains anonymous to me.  I have never felt so happy as when I have been running with a goal and a purpose in mind. 

On the day of the marathon, I ran the first five miles with Megan as she was running the Half Marathon.  We kept looking at each other with big smiles, amazed at all of the people around us – all of whom were also running for one good reason or another.  We couldn’t help but get emotional as we realized where we had been just one year previously.  The marathon was difficult, but I felt pushed along by all of the supporters lining the course, and all the supporters who had helped me through so much.  As I turned towards the finish line, I was joined by Megan, but then left her as I sprinted towards the finish.  The marathon capped an incredible journey Megan and I had taken, and it was all made possible by my donor.  While I don’t know who my donor was, I am and will be forever grateful to them for what they have given me.  I hope that everyone knows what a precious gift life is, and while losing a loved one can be too difficult for words to describe, saving another is a gift unlike any other.

When my phone rang last week, I recognized the number and answered, “Hey Marco.  How are you?” 

“I’m great,” he responded. 

Sounds like a pretty normal conversation, but there was a lot more in Marco’s answer than just a casual response.  Marco had received a kidney transplant just two weeks earlier and that answer meant the kidney was working, he was recovering from his surgery, and he didn’t have to go to dialysis that morning.  He spent over three years waiting for a kidney, so I can only begin to imagine what this means to him. 

Marco’s kidney came from a very incredible man named Scott.  I’ve heard Scott described as a generous man who is always quietly helping others.  Scott didn’t know Marco, but he did know the need for kidney donation was great, so he made a phone call to Intermountain Donor Services several months ago to inquire about Good Samaritan Kidney Donation.  His decision to donate gave Marco a whole new chance at life.

Marco was interviewed on Fox 13 news this morning about life after transplant.  Scott wanted to be there, but the travel distance and early morning hour made it infeasible.   His daughter has set a goal to double the number of Good Samaritan Kidney Donors this year, so he will be telling people about living kidney donation and the young man he freed from dialysis.

To learn more, log on to www.yesutah.org.

This blog post was written by the mother of a young liver recipient.

My little LuLu (aka London ) received the gift of life for a second time on January 15th 2010.  Unknown to us, London was born with a genetic disorder called Alpha-1 Antitrypsin Deficiency.  It is a disease that causes scarring to the liver and lungs.  We knew by the time she was 7 months old she would need a liver transplant by, if not before, her 2nd birthday.  It turned out to be much sooner rather than later.
 
The race was on to find a liver, through LIVING Donation Screening, as there is a major lack of organs available vs. NEED to allocate through the United Network of Organ Sharing (UNOS).  Children and adults die waiting for their much needed organ to be gifted to them.  London was listed on UNOS but we proactively starting the screening with myself (Mum), to no avail.  I was not a good match for my baby.  I wanted to fix her, to make her suffering stop, to save her life–but I was told I wouldn’t be able to.
 
Her Daddy was next but his liver was too big for her wee 11 month old body.  LuLu’s Aunt Cydnee volunteered but her liver wasn’t right for LuLu either.  Simultaneously LuLu’s Uncle Jordan was being tested as well…. London became very critical in December of 2009 and her status on the UNOS list went to top priority.  We were all praying for a Christmas miracle.  It didn’t happen on Christmas Day like Doctors hoped for her, but weeks later the miracle came.  It was like a second birth for her. 
 
Out of a tragedy life was given to 5 others, Lulu being one of them.  Ashley Maynard was struck by a car on January 8th and kept on life support until she lost all brain activity.  Her selfless parents donated all viable organs to strangers in need.  London being the youngest at 14 months and someone in their 70’s the eldest of the group.  They said they knew it was what Ashley would have wanted.  What a beautiful connection my London will forever have to Ashley and her family.  Our gratitude is never ending.
 
I would bring Ashley back if I could, but since I can’t, we honor her daily.  Myself, by being a better person and a better Mum to my two children.  London will grow up knowing why she has a big scar on her belly and the sacrifice had that enabled her to live.  She will live a life worthy of wearing her beautiful scar.  We value each day like it could be our last.  When our last days shall come for me or anyone in my family we will all be donors if God will allow.
 
In the last month since we’ve been home from Primary Children’s Hospital London has started eating and stopped vomiting.  She started crawling days within leaving the hospital and took her first steps just last night.  She is beautiful from the inside out, very happy & healthy- ready to lead a normal life.  She is a new baby, has blossomed before my very eyes.
 
Our deepest THANKS to Ashley’s family and anyone who checks Yes on their driver license.  Heaven doesn’t want our organs…leave them behind for those that do.
 
xoxo,
Lizzie
A very blessed Alpha-1, Liver Mum

Visit LuLu’s blog at www.liverforlulu.blogspot.com

“I’ve worked on Rose Parade floats for many years, but this is the first time I have had the opportunity to work on the Donate Life Float,” a man told me as he allowed me to hold a floragraph in place while he attached it to the float.  “This float is just incredible.  It has such meaning; I’ve never felt this with any other float.”

The feelings are strong in the Rosemont Pavilion where the Donate Life Float is stored while it is being decorated and prepped for the parade.  The Utah families, the Bryants, the Balls and the Newbolds, were given the opportunity to share their story on the Channel 7 news in California.  They placed a dedicated rose (captured on film by Scott Weersing and published in the Salt Lake Tribune) in honor of Caroline, who saved the lives of seven people after her own death, prepared flowers for placement on the float and exchanged stories with the many other families who traveled to Pasadena to honor a loved one or the donor who changed their lives. 

New Year’s morning found most of us sitting in the grandstands, waiting for the parade to begin.  Missing from the grandstand crowd were Tyla and Carter.  Tyla, Caroline’s liver recipient; and Carter, Caroline’s son, had the unique opportunity to ride the Donate Life Float.  They sat side by side, directly below the floragraph of Caroline.  Carter held a picture of his mother as they waved at the crowd.  In the grandstands, we received calls from friends and family still in Utah who were watching the parade on television.  They actually saw the float before it made it to where we were sitting.  Excitement filled the stands as the float slowly passed in front of our grandstands

The experience was summed up by a young mother I had the pleasure of meeting.  Her 6 year old son passed away unexpectedly and they made the decision to donate his organs.  “The atmosphere here has been great.  It is not a pity party even though we all have similar feelings of loss and pain.  It is a celebration of life, both for our loved ones who have passed on and those who are alive because of donation.”

Wow.  The last few days have been full of excitement!

We have the opportunity this year to honor Caroline Bryant on the Donate Life Float at the Rose Parade.  Caroline was about eight months pregnant in 1997, when she was involved in a tragic car accident.  Although medical staff were not able to save Caroline’s life, they were able to deliver her son, who is now a healthy 12 year old.  Caroline, who had previously discussed organ donation with her husband, became an organ donor.  Caroline will be honored in the form of a floragraph onthe Donate Life Float.  Her son Carter, and her liver recipient, Tyla, will  be riding on the float.

The floragraph, a word I think was created to describe the pictures of donors created with natural ingredients, is the major focal point of the float.  The decorating of Caroline’s floragraph began in California by the grammy winning R&B group, All-4-One.  They then brought the floragraph to Utah to give Caroline’s family a chance to complete the decorating.

The family gathered at Shriner’s Hospital for Children to listen as All-4-One sang to the patients and their families and then they were presented with the floragraph.  Caroline’s parents, Carter, and Tyla then completed the floragraph as several people watched and snapped pictures.  The family will also be going to California to participate in the Rose Parade.  There was a great article in the Deseret News and an equally great segment on Studio 5.