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

Sunday is Valentine’s Day!  Hopefully that news doesn’t come as a surprise to anyone.  The thing about this time of year is that just about everything is suddenly available shaped as a heart.  We totally use this shape to represent love.  Variations to the traditional heart bring up images of heartache, or new love with Cupid and his quiver of arrows.  It’s fun and romantic to think of the heart that way.

A posting on a bulletin board I saw recently caused me to stop and reflect on the significance of our heart driven traditions.  On the board, there was a picture of a human heart next to a traditional valentine’s heart.  The caption underneath read, “Which one would you rather receive for Valentine’s Day?”  Interesting question!

The traditional valentine’s heart was definitely more attractive and would be more appetizing with a box of chocolates, but what about the over 3,000 people in this country who are currently waiting for a heart transplant?  That healthy human heart is probably the most beautiful thing in the world to them.  A box of chocolates and a pretty card hold little value when you are fighting for your own life. 

Show your love this Valentine’s Day.  Make sure you get registered as an organ, eye and tissue donor.  Log on to the Yes! Utah Donor Registry website  and click the “Register Now” button.

Right before Christmas, I had the opportunity to meet two great people.  Fapuiaki, a precocious four year old, and Marco, a motivated 20 year old.  I met them both at a local dialysis center.

Every Monday, Wednesday and Friday, for four hours, they are hooked up to a dialysis machine. For three years Marco has gone to dialysis at 5:30 am to begin his treatments. “It’s pretty tiring, especially working full time and going to college too,” says Marco. “I’m just hoping to get a transplant soon so I can get back to a more ‘normal life.’”

For Fapuiki’s parents, it has been a life changing event.  What is especially frustrating for Fapuiki’s father is he is not a match to donate a kidney to his daughter. “I thought it would be no problem, since, basically, she is a part of me. As a father, I want to do everything I can to help her get well. This really isn’t a way for anyone to spend their childhood.”

Eight years ago, the Good Samaritan Living Kidney Donor Program was started to help kids like Marco and Fapuiaki. Over 45 people have become living kidney donors thanks to that program.  Now with paired kidney exchanges, living kidney donors can have an even greater impact.

Go to yesutah.org to find out how you can help Fapuiaki and Marco celebrate next Christmas free from dialysis. Please think about becoming a living kidney donor.

“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.”

When you are thinking about making your New Years Resolution, please think about saying yes to organ, eye and tissue donation on your driver license or state ID if you haven’t already done so.

If you just got your driver license or state ID and didn’t say yes, please go to yesutah.org and sign up. It only takes a minute and it will be one of the easiest things to take off your to do list this next year!

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.

Karen Hannahs, our Family Support Liaison wrote this lovely entry about the origin of our Donor Quilt.  Thanks to Karen for contributing the following story:

In my work as a Family Support Liaison, I am constantly in awe of how so many donor families cope with unspeakable losses and somehow turn their losses into something positive through helping others. One such person is Judy Hunter.

In late May of 1995 Bill and Judy Hunter and their family were at a reception celebrating the marriage of one of their son Greg. As Judy tells it, “It was Greg and Dawn’s reception but Katy’s (their six-year-old daughter’s) party.” The event was held at a county courthouse with marbled floors and banisters. In spite of being told not to play near the banister, Katy and her brother and cousin took to the second floor, and Katy decided to “ride the banister” (like a play horse) so she could watch  everyone below. She was quickly seen by family members and told to get down. In the process of lifting her foot she fell backwards and toppled over the banister falling to the floor below as several family members rushed to catch her. No one was close enough to intercept her fall and as she fell she hit her head. She was rushed to the hospital but never regained consciousness.

Fast forward to the summer of 1996. Judy was attending the transplant games held in Washington DC when she first came upon the National Kidney Foundation (NKF) donor quilt. Judy says, “I had just been to the different monuments including the Vietnam Memorial and that was incredibly emotional. I had the same feeling when I saw all these quilt squares” (sewn together in memory of those that gave the gift of life). Judy met Maggie Coolican, the donor mom who was responsible for sewing all those squares together. She quickly felt a kinship with her. Maggie, too, had lost her six-year-old daughter, who coincidently was named Katie.

Judy thought to herself, “There are a lot of people who will never make it to a NKF event and will not have an opportunity to see this quilt. I can sew. Maybe I could do this.”  One year later in 1997 the first Intermountain Donor Services quilt was born with 10 squares. Judy says, “This is something I can do that touches others. I sit and will often cry as I do it. I learn about the stories behind the squares. It can sometimes be heartbreaking and a challenge, but they are all stitched with love.”

Judy and Bill had a large family before Katy died, including their daughter, Dianna who died of Osteosarcoma in 1990 at the age of fourteen. After Katy’s death they decided to adopt two children and along with their (total) 9 biological children, they welcomed Nathan and Sharyn into their loving home.

Putting the quilt together is absolutely a labor of love and one that has helped in the mourning process. But there are other things the Hunter’s do that help to keep Katy and Dianna’s spirit strong. The family’s strong faith and religion has helped them immeasurably and their belief that they will see their daughters again provides immense comfort. They talk freely about them in their home and the girl’s younger siblings have a real sense of who they were. Every year they decorate a tree in honor of Katy and Dianna for the Festival of Trees. You might even see the family at their grave site putting colorful windsocks on the girl’s headstones. Judy says, “I work in labor and delivery and normally experience a lot of happy moments, but when a child dies, I always talk to families about the importance of talking about their child and acknowledging the loss”.

Judy and Bill feel like the experiences they have had in the years following their daughter’s death have helped them continue on in spite of their heartache. “There is so much love out there, so much good. You learn that after you lose a child.” They also recognize that the (sometimes unbearable) hurt comes from the love they have for their daughters, “We hurt so much because we love so much.”

I had the wonderful opportunity to host our quarterly Volunteer Training Dinner a few weeks ago.  What a fantastic evening!  I truly enjoyed meeting several new volunteers and visiting with a few IDS “veterans”.  We had folks attend from all over the valley to learn about how to best communicate our message of the importance of donation.  We were even blessed with five visitors from Logan– I felt special!  We talked about what IDS is doing in the social marketing arena (Facebook, Twitter, etc. ) and went over several details relating to organ and tissue donation.

However, it wasn’t just the volunteers that were educated that night!  I even learned a thing or two, such as what is an appropriate beverage to serve to transplant recipients!   After several volunteers arrived, I excitedly told them I had brought my new favorite holiday drink to share with them, Pomegranate 7-UP.  Imagine my chagrin when several of them kindly told me that they can’t eat or drink pomegranate!  It interferes with their anti-rejection meds, as does grapefruit and a few other foods.  They were very lovely about it but it was a bit of a “Doh!” moment for me.  So, to any of you planning your holiday party menus, keep in mind the special dietary requirements of your transplant recipient friends!

If you are interested in volunteering with us, you don’t have to wait for our quarterly training to get started!  Click on the “Volunteers” tab on our homepage at www.yesutah.org and we’ll get you going!

When I first started working here, I wondered, where is this “registry” I’ve heard about?   Who runs it?  What does it look like?       Does it look like this?

Or  this???

Or this????      

So here is the inside scoop – When you say “Yes” to donation, your wishes are recorded in a database managed by Intermountain Donor Services (IDS) of Utah.    It was created to make sure that all those who want to donate can document their decision, and so it can be easily affirmed that a person wishes to be a donor.  Only a limited number of people have access to the registry database.  Personal information in the registry is not shared with any hospital, company, or government agency.  IDS is a nonprofit organization of about 50 people that handles everything from the actual organ and tissue recovery, to professional  and public education, to donor family support services.  There are other private foundations out there related to organ donation who may hold fundraisers and awareness events, but IDS is the only federally designated organization for Utah, and areas of Wyoming and Idaho.  We are also the Donate Life affiliate for this area.

When you call the YesUtah Donor Registry, you may get a recorded message because we don’t have a call center at all, or a back room full of people on the phone.  In fact, “we” look like this:

If you get our recorded message, be assured we’ll call you back, usually within a business day.   We love to answer questions, help people register to be organ, eye and tissue donors, or share a great story about one of the many miracles that happen around here every day!

Written by:  Tyler – a fifth grade student

                                     I saw him and could see the tears in his eyes,

                                    My brother Jared, sick and needing a transplant to save his life.

                                    He is suffering, yet such a strong little boy

                                    He has to go through so much,

                                    Still so sweet, even when everything is tough.

                                    He needed just one,

                                    One person, to survive.

                                    That person who needed just one part to provide.

                                    Jared was given that one part, just one

                                    From a person who passed away

                                    To give Jared his freedom.

                                    Now after that event, my brother is free

                                    And knows more things, is as happy as can be.

                                    Of course his is still that little boy that I know,

                                    But he now has the strength to run

                                    Because of love and the power of one.