Thank-you for coming to visit us. I would like to tell you a little about my Skylar and why she's so special.

My name is Marquette Haynes; I'm the Mum of a 4-year old little girl who received a life saving gift of a liver transplant, on June 16th, 2001 in Miami, Florida.

When my daughter, Skylar Nicole Haynes was born on August 24th, 1998 we never thought she would change the course of our lives or inspire so many to change theirs.

You see she was born with four holes in her heart. At the time we were told she may need open heart surgery but as we were to find out later that was only the beginning.

Blood work and examinations soon revealed an enlarged spleen and a liver twice the normal size. At eight weeks Skylar had an open liver biopsy and was diagnosed with Alpha-1 Antitrypsin Deficiency (Alpha-1). Alpha-1 is a serious hereditary disorder that can result in life-threatening liver and/or lung disease in children and adults.

Although her heart healed itself over time, her liver did not. Skylar's liver function was slowly beginning to deteriorate and there was nothing we could do to stop it. Her only hope was a liver transplant.

By the age of two Skylar had battled pneumonia six times. She had to have all of her upper teeth removed due to Acid Reflux. A hole in her bladder was leaking back into her left kidney causing Urinary Reflux. She had her tonsils and adenoids taken out and ear tubes put in and removed twice due to excessive bleeding.

After a hernia in her stomach and the Acid Reflux were surgically repaired she began to develop fluid around her liver and spleen. Her blood levels dropped dangerously low leaving her completely unable to fight off infection. We knew the need to be listed for transplant was becoming urgent.

On April 21, 2001 she was placed on the University of Miami/Jackson Memorial liver transplant list. Six weeks later we received our first call. My husband and I were thrilled, scared and sad all at the same time because we knew another family would be grieving in our time of joy. Skylar was flown to Miami via a Med-flight for the operation. But when we arrived we were informed the liver was damaged and they could not proceed with the transplant. The medical team examined Skylar and asked us to stay in Miami. Twenty-four hours later the call came again. This time it was a perfect match. We rushed to the hospital. Thirteen and a half hours later the liver was in place and working beautifully. SKYLAR HAD A NEW LIVER!!!!

During the operation my husband and I were watching the news in the lobby when a woman came on the screen. Chills ran up my arms as she told the story of her two small children, a brother--Taylor age 4--and a sister--Amber age 2-- who had drowned in a backyard pool hours before Skylar's surgery. I can't tell you how, but I knew they were our donors. Never in my wildest dreams did I ever think we would actually meet and I would call her a friend.

Even though Skylar had undergone the life saving operation and things seemed fine, the time after surgery was critical. There were concerns of infection and bleeding, worst of all her body could reject the organ. On the fifth day after surgery, still in ICU, I noticed her abdomen had become enlarged. I spoke with the nurse and together we watched over her through the night. By morning we knew something was wrong, Skylar was bleeding. She was rushed into emergency surgery to remove the excess blood from her abdomen and repair the leaking hepatic artery.

By the age of three my daughter had been hospitalized over 30 times for 17 operations, three liver biopsies and countless infections. She was also diagnosed with hereditary Epilepsy, which was causing her to have seizures before and after the transplant. Despite the adversities, Skylar remains an amazing child. She smiles at everyone with a gentle spirit and a wonderful personality many have come to love. She holds her arm out for her weekly blood draw and never once has complained.

The liver transplant cured Skylar of Alpha-1 and for that we are grateful. So we now dedicate our lives to raising awareness of Alpha-1 and the importance of organ donation. My daughter was blessed but there are others who are still waiting for their gift.

Although Skylar has recovered from Alpha-1 she also suffers from other conditions. She was recently diagnosed with Pancreatic Insufficiency. Her pancreas has stopped producing the necessary enzymes to enable her body to absorb nutrition. A 24-hour jejunum feeding tube has been placed in her intestines to help keep her body from starving itself to death. The tube is keeping Skylar alive. But it hasn't slowed her down as she runs down the hallway pushing her feeding pole chasing her sisters and laughing.

Skylar has her own website and during this difficult year since the transplant, more than 10,000 people have logged on to read her story. She has been able to touch more lives with her smile and courage than I ever could have imagined. If you would like to read more about Skylar you can log on to her website, at: www.rdwebworks.com/skylar

God bless you and thank you for letting me share Skylar's story.

Sincerely,

Marquette Haynes (Skylar's Mum)