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Old Dec 6, 2007, 04:27 PM
Marisa Marisa is offline
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2006 “Making Lives Better” award recipient

2006 “Making Lives Better” award recipient

By: Marisa McFate
On June 20, 2006 at the Closing Ceremonies of the US Transplant games, I was awarded the Making Lives Better award. In my shock and disbelief by the time I reached the stage, I was speechless. 18 years ago, my life-changing journey to where I am now began.

I received a liver transplant at the age of 11, after battling biliary atresia a liver disease since birth. Up until I received my transplant due to biliary atresia, my family and I knew no one else going through this similar experience. We had no one to turn to for knowledge or support, except the doctors. They were our knowledge and guide through biliary and liver disease. While waiting for my transplant, we finally began meeting children and families dealing with biliary atresia, liver disease, and liver transplant.

Since that time, I have met hundreds of children and families from around the world who are traveling on similar paths as mine. They know what it is like to journey through biliary atresia, liver disease, and liver transplant. There isn’t a day that goes by that I do not communicate in some way with at least one family. I visit the hospital almost monthly or sometimes more. I send many emails and cards with well wishes and encouragement to kids and their families. Phone calls are made, websites read, and messages left. There is also grieving for the kids who pass away. Our Liver Family is a big family though, and we support each other as we all deal with the grief and sadness together.

Parents tell me all the time that I have been their hope, inspiration and encouragement. I see it differently. The children bring me hope and inspire me to keep living and doing all I do.

Now let me introduce you to a few of the children!
In my memories, I have hundreds of stories about my “liver kids”. Each child has touched my heart in a very special way. Although there would never be enough time for me to tell you every story, I wanted to share the stories of just a few of my special kids (permission has been granted from each family written about below).

Carly was just 14 months old when she received her liver transplant due to biliary atresia. She was born with biliary artresia, and when she and her parents should have been enjoying life, Carly’s funeral was being planned. Doctors told Carly’s mom and dad that she only had weeks left to live, and Carly was struggling to survive due to biliary atresia. Luckily, she did receive her gift of life in time, and today she is a vibrant 8 year old that loves to ride her bike and enjoys horseback riding. I have had the privilege to baby-sit Carly. Although Carly’s now struggling with some new complications, she continues to teach me how to enjoy every minute of my life!

Carson calls me “Auntie Marisa”. I had the privilege of helping his family during their most vulnerable time while he was waiting for his liver transplant. Carson was also born with biliary atresia. There were many ICU visits and many tears. He has endured several challenges since birth, including biliary atresia, 2 heart surgeries, a liver transplant, and a hearing loss for which he wears hearing aids now. None of this stops Carson though. Carson loves drawing and coloring. He attends school and swimming lessons. He starts each day with a renewed gusto and ready to conquer his day. Carson reminds me that I can do anything!

I met Juliann when she was 3 years old in Green Bay, WI at a liver transplant/liver disease picnic. Juliann was born with biliary artresia and continues to fight this disease back at her home in California. While chatting with her mom one day, she said that Juliann was telling everyone that I was her cousin. Since then, we have been cousins joined by the bonds of biliary atresia/liver disease. Juliann has an enormous zest for life!

I’ve never met Rainier or his family in person. He has already touched my heart though, as he continues to fight biliary artresia. He lives in the Philippines and desperately needs a liver transplant. As of today, he is unable to undergo a liver transplant due to lack of funding, and his family cannot afford the enormous costs associated with a liver transplant. His country also does not have the available medical staff/facilities. When the money is raised, he and his family will need to travel to either Taiwan or Hong Kong. Rainier’s doctor has transferred to Hong Kong, so his family would like to go there for his liver transplant, but the cost is double that of Taiwan. This family sits and waits in hope that enough money will be raised in time so their eldest son, who suffers from biliary atresia, will have a chance at life.

Jayli is one of my liver kids that watches us from Heaven. Jayli endured many complications after receiving 2 liver transplants due to biliary atresia. Precious Jayli Bug passed away at age 2 ½ while she was waiting for a third liver transplant. Jayli’s daily struggles and death devastated the pediatric liver community. Many will also remember Jayli’s contagious smile and love for her paci’s.

There is no doubt about it, I love these children. I know what they go through, and am hopeful that one day there will be a cure for biliary atresia and all liver diseases so no more children will suffer. I accept this award on behalf of all my liver kids that they will continue to inspire and encourage others.
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