Ed Brailey In Tribute

When I met Ed in 2005, I was a newbie to the Alpha-1 community. He and I were elected to the board of the Association that year. Previously, I had read his story in the Foundation's Alpha 1-to-1 magazine.

I was touched by his amazing dedication to give back to the COPD, transplant, and Alpha-1 communities. As a mama to two beautiful little girls who have Alpha-1, I was always looking for inspiration. Ed was pure inspiration to me.

In fact, the day we met I will never forget. He sat down next to me and said, “Jen, tell me about yourself, and about those beautiful girls I’ve heard so much about.”

That conversation created a connection.

And that, to me, is the epitome of our precious Ed Brailey – connecting Alphas one-by-one using his subtle charm and unpretentiousness.

When Alpha-1 came into my life, I felt very alone. There were not many parents of Alpha-1 children that I could find at that time.

Ed helped reassure me as I doubted how much of an impact I could make or how much I could help.

I remember the smile that grew upon his face as he said, “Jen, keep up the great work. We need to bring the kids into our group. You being here will help draw out the other parents. We’ll do it together, Jen!”

I couldn’t help but smile in return.

Ed may not have realized how much he cemented my connection to our community, but I know one thing for certain.

I promise to continue the mission until every last Alpha gets the cure.

So thank you, Ed! Our world has an Ed Brailey-sized hole in it. Your dedication, perseverance, and amazing service will be missed.

Long live the Alphas!

God speed, Ed!

Alpha-1 Sucks The Life Right Out of You

This video is a public service announcement from the Alpha-1 Foundation. I know it is controversial but in my opinion, it is a fabulous advertisement. It grabs your attention, and that is exactly what we need to get the word out about the prevalence of Alpha-1. 1 in 2500/3000 births is NOT RARE. It may be considered a rare disorder, but it is NOT RARE.

Alpha-1 Foundation - Finding the Cure @ Yahoo! Video

Gifts of Life

From the moment Grace was diagnosed with Alpha-1, I began a quest for knowledge. That journey to knowledge led me to a group of the most caring and supportive friends I've never met in person. My friends at Liver Families understood my worries, fears, and celebrated my girls' successes. They understand. They care. They know. They believe in cures and miracles. They do not turn away from Alpha-1. They do not have pity in their eyes for me, as the parent of two girls with a potentially life threatening disease. They know me as simply a parent...who loves her children. They know the greatest gift of life...time with loved ones when you have it. No life is taken for granted. No life is wasted. No love is wasted.

Two of my little Liver Families kiddos have left this life and flew on to be with the angels. Trenton, age 4, left yesterday, and Devin, age 2 1/2, left today. With profound sadness and tears in my eyes, I share their stories to encourage any of my readers to consider organ donation, especially during Organ Donation Awareness month.

I've followed Trenton's story for years...before, during, and after his liver transplant due to Alagille's Syndrome. An organ donor's gift gave him life and more time with his family. A head injury from a fall out of a window took his life, and now, his family is returning that gift by sharing his life with others in need.

I didn't know Devin as well, but his beautiful "sweet cheeks" nick name caught my attention. His gastroschisis caused intestinal atresia. He received a liver, pancreas, and intestinal transplant.

Please take a moment to appreciate your blessings in life, and please consider signing up to be an organ donor. Please do not forget to discuss your choice with your loved one. They ultimately make the decision for you after you are gone.

Oh and, please pray or send positive thoughts for Trenton and Devin's families.

Annika Got the Call

There are a few bloggers who have captured my heart and attention over the past years. Moreena of Falling Down is Also a Gift is one of those bloggers, and announced this morning that her daughter, Annika, has been called for her 3rd gift of life. Annika is such a beauty, strength, and life force, and Moreena often documents Annika's ever present life philosophies. :)

This is such a wonderful birthday present for Moreena, and I pray that the transplant goes smoothly. Please consider positive thoughts/prayers for Annika, her family, and the organ donor's family.

Gavin in PICU

A few weeks ago, I mentioned that Gavin had been passed over with his gift of life. Well, it happened a 2nd and 3rd time. Now, he has been moved to the PICU, and honestly, it appears he needs many positive thoughts and prayers. So, please, if you can spare some, please send them to a sweet Gavin. He really needs them.

You can visit his blog here: http://giftforgavin.org/

Thanks!

False Alarm for Gavin

Sad to say, but Gavin's transplant didn't happen. False alarms happen, but they are often an extreme let down for the family, who are desperate to save their loved one's life. Unfortunately, the transplant team decided that the liver could not be split between two patients.

Continued positive thoughts and prayers for Gavin and his family.

Gavin Gets the Call

I just learned that a little baby boy, named Gavin, has been called for a liver transplant due to his progressive liver disease from Alpha-1. Please consider sending positive thoughts or prayers to him, his family, his surgical team, as well as his donor's family.

For more information, see his blog: http://giftforgavin.org/

Gavin has had a rough time lately, and this is a very much needed blessing to have him receive the call. I hope the surgery is still a go and the donor liver will be a perfect fit.

Go Ali!

Ali's life has been so inspiring to me since I met her mom online in 2003. Enjoy this inspiring article about her life since liver transplant due to Alpha-1.

A new outlook on life
Transplant source of inspiration for FSHS senior

Free State senior-to-be Ali Jacobsen will be competing in the U.S. Transplant Games in Pittsburgh over the weekend. It will be her third trip to the Games, which take place every two years. At just 7 months old, a liver transplant saved Jacobsen’s life in Omaha, Neb.

By Matt Tait
July 12, 2008

http://www2.ljworld.com/news/2008/jul/12/transplant_source_inspiration_fshs_senior/

Mystery Diagnosis: Alpha-1 & Len Geiger

When I went to the national Alpha-1 conference a few years ago, I sat down next to a very clean cut looking man. He introduced himself as Len, and he immediately asked me my story and how I came into the Alpha-1 community. He shared his story with me too, and like most of the stories I've heard from Alphas, his touched my heart. Please enjoy these videos of Len, who appeared on the television show, Mystery Diagnosis. Kudos to Len for getting the word out about Alpha-1!

Click on each video to watch Len's story. Part 1 is 7 minutes, 15 seconds, and part 2 is 8 minutes, 16 seconds.