LIVEr Champion

2019 Long Island LIVEr Champion

Philip

Philip was born in July 2013 and was seemingly a happy, healthy baby. He had some jaundice in his eyes, but we were assured this was normal and it would soon fade away. At 6 weeks old we realized that Philip’s jaundice was not going away and we insisted that they finally retest his bilirubin. We received a call later that day to get to the emergency room.

After many tests and a biopsy, it was determined that Philip had Biliary Atresia. At 8 weeks old he underwent a surgery called a Kasai which serves as kind of a “temporary” fix that allows bile to drain from the liver.

Philip spent the next 2 years in and out of the hospital. He developed Portal Hypertension, which caused him to have esophageal varices and GI bleeds. At that point it was determined that Philip should be listed for a liver transplant, but according to his bloodwork, his PELD score was not high enough to get him transplanted any time soon. His team suggested looking into living donation, so we discussed it as a family and we decided that Philip’s Dad, Dan would get tested first. And he was a match!

On May 10th, 2016, both Phil and Dan were wheeled into the operating room and our lives were forever changed. Both are doing great since, and Dan sometimes forgets he even had surgery. Philip has had a couple of bumps along the way, but transplant has allowed him to start kindergarten this year and keep up with his peers. He is a typical 5 years old boy who loves cars and playing with his brother. You would never know all that he has been through if we didn’t tell you!

The Liver Walk is one of our favorite days of the year. Our family, friends and colleagues gather with us to help support the fight against liver disease. We make a day out of it and stay at the park for a picnic after the walk.

Please join us in participating in this year’s walk and recruit your friends and family to walk with you or support you with a donation. Every donation, even $1, counts towards raising as much funds as we can for this year’s walk. We wish you a great Liver Life Walk Season and hope to see you on May 18th at Eisenhower Park!

By Kim Kennelly, Liver Champion’s mom

2019 LIVEr Champion

Manny

In 2010, Manny was only two and a half months old when he was diagnosed with biliary atresia (BA). Very soon after he was diagnosed, he had his first surgery called the Kasai procedure. His first years of life were tough as he was frequently having to get flown to the hospital. It seemed like something was always wrong, and things were not getting easier for him.

The year of 2017 was a tough one; he was in and out of the hospital and eventually his doctor gave us the news that he needed a new liver. Even though I knew the day would come, it really hit me. We were very scared and felt helpless. On January 2, 2018, we had another trip to our local emergency room, resulting in another flight and hospitalization. By January 16th, we received the news that Manny was on the transplant list.

Two weeks after being added to the transplant list, I received the call that would change our lives. I could hardly believe that an altruistic donor had come forward. We were shocked that a stranger was willing to donate a piece of his liver to help save Manny’s life.  While we were in the hospital waiting for his recovery, we sent the donor a thank you card. We will always be extremely thankful for what he did. We received a letter back, and in it was the donor’s phone number. We finally got to meet and were able to express our gratitude.

By Karina Estrada, Liver Champion’s mom


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