Letters from Tissue Recipients

We were given a book of letters from tissue recipients and I would like to share some of those letters to help everyone see how important the gift of tissue is too.

"...Because of you, our daughter, now ten, has two legs to walk on. Two years ago, a bone tumor left her with fear and pain. .... Your loved one will ride with our daughter on her bike, play in the cool waters of the lake and dance at her first prom. Your sacrifice has restored her laughter and returned her childhood."

"... I am 22 years old and have had three prior knee surgeries. This was my final attempt at a healthy, functional knee. Today I took my first steps without crutches and no pain at all..."

"... I recently had two operations to fuse my spine and repair my left arm. Before surgery, I was in constant pain in my shoulders and left arm and had unrelenting headaches. Since the operations I have not had one headache and most of the pain is gone already. I am finally free of pain medications! I am now confident that when my first grandbaby is born in a few months that I will be able to hold him/her safely and be the grandparent I want to be. ..."

" ... In July 2007, I received tissue to repair three bones in my left foot and to lengthen my Achilles tendon due to a slippage of my heel bone. This was all done to keep from having my foot amputated. ..."

"... I am a 42 year old woman experiencing my second bout with breast cancer. My tissue transplant was provided during my surgery for a bilateral mastectomy an reconstruction. I am mending well and I believe the tissue transplant has aided greatly in keeping a positive self-image and reducing the shock the surgery had on me emotionally. ..."

Paul A McDaniel Foundation

While in Washington DC, we were able to hear so many stories about loss and donation. A few families, like us, had establish non-profits in memory of their loved one. One such is the Paul A McDaniel Foundation. Paul's parents were at the ceremony and told the story of their young son, 22, passing away due to a stroke. Their Foundation was established to bring awareness and education to young people about strokes and organ donation. www.paulmcdanielfoundation.org

Best Part of the Trip

The best part of the trip ~ all the wonderful people I was able to meet, the stories we shared, the memories we made. What a great support group these people are. We all share a common bond even if each one of our stories is just a little bit different.

The group of us from the area covered by Midwest Transplant Network happened to have our loved ones on the same quilt, which was displayed in DC.

Me with Abby's square.

Diane with her husband and grandson's squares.
Doug and Julie with their son's square.

LifeStar Necklace

All donor families were given a very special gift at the ceremony. Marcie Waldron, a kidney and pancreas recipient hand-made these special sterling silver LifeStar necklaces. Her donor family told her about a special star in the sky representing their son and watching over her. This inspired her to create the LifeStar as a symbol of appreciation for all donors. The spiral in the center of the star symbolizes the continuity of life. This spiral circles around several times and then changes its path to create a new form, a star, representing new light and new life for others. Since each LifeStar is hand-made, each is unique just like the life it celebrates. www.LifeStar.info

Gift of Life Donor

At the National Donor Recognition Ceremony, we were given a medal and a certificate to honor Abby.

The medal included the following ~

Each year the lives of thousands of men, women and children are saved or greatly improved through the miracle of transplantation. The true heroes behind the miracle are the living and deceased donors who gave the Gift of Life and the families who made it possible. Words cannot possible express the gratitude of those whose lives have been helped.

For this reason, the Gift of Life Donor medal and pins were established. They were created as a remembrance for those who helped improve the lives of others through organ and tissue donation. The medal was designed as a keepsake or to be placed on the memorial at the cemetery. They are symbols of the gifts given by living and deceased donors. The medal's designer described the inspiration and meaning for the design as follows:

The Gift of Life Donor touches and gives new life to others. The donor touches the hand of the recipient, and passes on the precious gift of life (the heart) and love (the rose). The magnificent and honorable giving of oneself is illustrated in the rays extending from the heart.

National Donor Recognition Ceremony

The National Donor Recognition Ceremony was held on Sunday, July 19th. Over the next few posts, I will be sharing details of this wonderful ceremony to honor all those who have gave the gift of life.

The ceremony was hosted by the US Department of Health and Human Services, the National Kidney Foundation, and TRIO (Transplant Recipients International Organization).

During the ceremony, transplant recipients spoke. A young 16 year old and her Mom talked about what her heart transplant meant to their family and how life is now normal for her, except for a few more doctor visits and a few more medications than her friends. A double lung recipient then performed a Spanish dance for the audience. The man never became short of breath and danced flawlessly. Another woman spoke about how the gift of sight literally opened up her world again.

I would like to finish this post by listing the names of all the donors that we honored during the ceremony.

Deceased Donors ~
Otto William Abel, Skyler Albright, Kyle Andersen, Jenna Mae Arnett, Justine Avendt, Cole Richard Baldwin, Tony Ball, Ron Barham, Stacey Lydell Bates, Edward William Berryhill, Jennifer Kress Blalock, Christopher R Boehm, Caitlin Marie Boles, Jared Daniel Bowers, Malcolm M Brinson, Susan Marie Brunhuber, Lawrence James "LJ" Buchanan, Hunter Michael Burns, Katie Lynn Buskirk, Patrick Michael Butler, Cory Carlson, Austin Rhett Carter, David Franklin Cato, Sean Patrick Clegg, Regina Rose Collins, Michael Scott Crozier, Tony D'Acquisto, Bhakti Datta, Jazmyne Davis, Marc William Dawson, Barrett J Dederick, Katie DeRosa, Maria Susanne Diaz, Warren Niel Dougherty, William Gregory Driscoll Jr, David Edgecomb, Ryan Evans, Dylan R Flew, Ana Maria Flores, Jesse David Frank, Justin Franks, Christine Fulghum, Stella Naomi Furjanic, Jasmine Garcia, James (Jimmy) Ginter, Michelle Marie Greever, Michael David Hall, Krysta Hankee, Shelby Amanda Harper, Carolyn Harrell, Julie Ann Harris, Dustin J Hart, Paul Travis Hickey, James C Hill Jr, Zachary Taylor Hutchens, Joseph A "Badger" Hutson, Darryl Iriny, Christopher Jacobs, Amanda Jensen, Matthew Alexander Johnson, Bradley Jordan, Louis Herman King III, Steven T Largent, Abigail Lear, Sadie May Logan, Victor Lozada, Hedaia Madi, Hunter Vincent Magro, Julianna Grace Martin, Addie Mathis, William Patrick McAndrew Jr, Paul Andrew McDaniel, James McDowell, Gary Lenzie McInnis, Leo Mehringer, Marilyn Mehringer, Chelsea Ann Metzger, Denton Wayne Miller, Todd Davis Miller, Gary Lee Montgomery, Ron Mosely, Karen L Musto, Abrielle Lauryn Neff, Warren L Ohlinger, Alvaro Ortega, John Robert Parker Sr, Timothy Daniel Parker, Shirita Latoy Peay, Tribhawan G (Anand) Persaud, Daniel Martin Polhemus, Jeffrey John Plmkala, Amber Dawn Poynter, Jared Rainey, William G Reinbold, Chelsea Beth Richardson, Debra Robinson, Brandon C Rutledge, Cassandra G Sandvick, Darlene F Schmitt, Stephen J Schoenfeld, Jeffery John Shetler, Evin J Shoap, Holland Dru Shoemake, Travis G Shollenberger, James Smith, Douglas B Smyly Jr, Kali Nichole Sparks, Christoper Spencer, Adam Christoper Stull, John Talbot, Eugene "Chuck" Taylor, Amaya Elise Thomas, Jordan Scott Underwood, Deborah Bargas, Robert Stephan Warburton, Davis Warner, Michael Weadock, Carol Weed, Gene Wilson, Charles William Wintzell, Brian Wynne, Allen J Zenker, Jason Erik Zepel

Living Donors~
Sherri Bauman, George Blank, Alan Brandon Sr, Laleise D Curtiss, Monica Davy, Vivian Ferebee, Terri Goodwin, Scott Greene, Ruth Ann Hess, Jenny Hoover, Todd Miller, Violet Mousseaux Crow Good Voice, Robert Oshinsky, Christina Plummer, Howard Pritchard, Andrea Riegler, Alice Marie Siete-Nevel, Janet Suker, Lora Ward Wilson

National Quilt Pinning

We were able to attend the quilt pinning ceremony to place our square on the next panel of the National Quilt, which is up to 36 panels now. This meant more to me than just mailing in the square like I have done on the other quilts Abby is on. This was an emotional moment for me as you will be able to see from the pictures.

The quilt panels look like white sheets before the ceremony began.

I had my tough face on and held back the tears through every one's stories about their squares. I waited until the end to pin Abrielle's square, hoping to keep the tears away. Unfortunately that didn't happen as I told about the square to honor my little girl. (That's one of my new friends from the trip with me Jan O. She's wonderful!)

This is the pinned quilt from everyone at the ceremony. Many more squares were mailed in and they will be added to the panels too. Once the panel is added to the website, I will add a link and tell everyone what number panel Abrielle's square is on.

Donor Memorial Garden

At UNOS, there is a Donor Memorial Garden that we were able to visit. The garden was beautiful, but it started raining on us so we had to hurry our visit a bit.

The first thing you come to is the Wall of Tears. It's a little difficult to see in my picture, but the stones that protrude from the wall have the following written on them ~ friend, wife, son, daughter, brother, sister, mother, husband, father.

This is followed by the Gift of Life Fountain.

"Water flowing over the sculpted bronze hands symbolizes the gesture of giving and sharing, through donation."

The Wall of Names ~

We were able to place flowers in the cubby holes and along the wall in memory of our loved ones. Here are the flowers I placed for Abby.

The Butterfly Lawn~

This is a wind chime ~

UNOS Trip

We took a bus trip to UNOS (United Network of Organ Sharing) on Friday which is where it all happens. By that I mean, this is where "the list" is that people talk about. This is the place where all the recipient's information is stored (blood type, age, location, genetic properties, etc) until a suitable donor is found. This is the place where the donor information is sent to. This is the place where the matching happens and the donors and recipients lives cross paths. Looks like just an ordinary building, but what a powerful, life-changing building it is.

We were given tours of the building and walked through how the process takes place. Below is the Call Center that operates 24/7. They are the ones taking the information from doctors for both those being placed on the transplant list and deceased donors. They are the ones going through the database and making matches. They are the ones contacting the hospitals to let them know of a potential donor for their patient. They are the ones arranging flights for the organs to travel to where they are needed.

The country is divided into regions and this helps determine where some organs are able to go since some have to be transplanted more quickly.

A couple other things I learned on the trip ~

Organs don't travel in a Playmate cooler like is shown on tv. Here is how they travel.

They are first placed in a tupperware container in a sterile solution. That container is placed inside 3 sterile bags which is then placed in a styrofoam cooler of ice. All this is placed into the waxed cardboard box. The box is the last thing placed on a plane and the first thing off. Flights carrying organs are given importance over others, being the first to takeoff and the first to land.

I also want to show you how far technology has come. This big barrel is the first kidney dialysis machine and the little white cylinder is what is currently used.

Off To DC

My Mom and I are off to Washington DC to the National Organ Donor Recognition Ceremony. We will be attending classes along with the ceremony and pinning a quilt square on the national quilt. The dimensions are smaller so less room to embellish the square. Here's what will be on the national quilt ~

Nodaway County Fair Parade

The Nodaway County Fair Parade is this Saturday, the 18th at 9:30. The Foundation will be having a float in the parade and will be passing out Popsicles like last year. The theme is Great American Heroes, so expect to see something patriotic.

The route this year will be from campus, up fourth street, turning south on Buchanan, and ending at second street.

We'll see you at the parade!

Fair Memories ~

Anything that brings joy and excitement to the faces of our girls also brings heartache to us. We just can't seem to experience one without the other. These two emotions that should be at the opposite ends of the spectrum are now one in the same in my life. This weekend was just another one of those nights. We took the girls to the Hopkins Picnic for them to enjoy the festivities, which they did. Of course we enjoyed the time with our girls, watching their faces light up as they ran from ride to ride, but our Abby was never far from our minds. We only had to look at each other to know we were both feeling it. These feelings, coupled with the pieces of Abby we see in our Elly, made the evening more emotional for me. For our Elly, the wilder the ride the better, which is so much like our Abby. I try so hard to not compare them, but there are just moments that I can see my Abby shining through in Elly's personality, almost like she has a little coach. I know she's not learning some of these things from Mady because they are just opposites. I am thankful for those glimpses I am able to see.

Toad Holler Luau

The Maryville Elks invites members and guests to a country luau. Proceeds from this event will benefit the Abrielle Neff Foundation, Big Brothers and Big Sisters, and the Elks Youth Fishing Derby. Here's the information for the event ~

Saturday, August 1

Toad Holler (Jim Holt's farm)

Starts at 5 pm - Dinner at 7 pm

Pulled pork with all the fixin's and hot dogs for the kids

$5.00 per plate

They will have a DJ providing music, games for the kids and adults, and a dunk tank. There are jars at the Lodge for donations and the member that collects the most money will be first into the tank. That member will then get to pick a friend to go next. Some members have already volunteered to be dunked.

Giving Back

The Foundation was blessed with a donation from a little boy that received a stuffed animal for his outpatient surgery at St Francis. This little guy wanted to give back and here's what he gave...

He bagged up the animals so that they are ready for cards to be added and ready for love from the next kids in need.

More Beanies

Sharing a donation made by my sister Beth. She was able to find these Beanies marked down for $2.00 at her local HyVee store! What a great find for the Foundation!

Swing

Sharing another layout from my In Loving Memory scrapbook. This one is titled "Swing". Abby is just over 2 in the picture on the swing. I have ones of her older swinging, but just love how cute she looks in this picture saying "cheese".

The journaling reads, "How I wish I would have stayed outside and kept pushing you on the swing the night before the accident instead of going inside to cook supper. If only I had known, I would have pushed you on that swing forever. That is probably the biggest change I've made since losing you ~ new priorities. And that means there is always time to push a swing, supper can wait."

Beanies, Beanies, Beanies

Kathy Wiederholt donated her wonderful collection of beanies to the Foundation. Look at the rubbermaid full we were given, plus the container too! Receiving storage containers is another great gift to receive since we sort and store the stuffed animals by kind to make sure we a good mix of different critters to take to the hospitals.

Left on the Front Porch ...

My Mom returned home one day last week to find this left on her front porch ~

Aren't they cute! Thank you to whoever left these for us!

Happy 4th!

Have a safe and happy 4th from the Abrielle Neff Foundation!

Donation

The Seipel's brought the Foundation a bag full of animals. I am loving the puppy that holds a rolled up fleece blanket. Whoever gets this puppy gets a bonus blanket! CMH always makes sure the kids there have blankets their size to use and sends them home with them. We have the blanket that Abby had that day with her other things sent home from the hospital. We also were given a fleece blanket to take home to Mady, which she still has.

A Special Treat

I forgot to share with everyone one of the special treats we received at the Celebration .... We were able to see a two week old baby owl! The species slips my mind right now, but it was a cute little thing. The baby made the trip with the Wings of Love birds so it could be fed. We were able to watch this little one be fed a chopped up mouse (eww) and did get to touch its soft feathers. The owl will turn opposite colors as what it is right now ~ the black will be white and the white will be black.

~ that's Elly and I looking at the baby ~