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Madelyn S.

Biliary Atresia

Madelyn was diagnosed at 7 weeks old with Biliary Atresia. We took her to the ER after friends and family reached out with concerns of her color. She had her first major surgery, The Kasai Procedure. That procedure failed and Maddie was evaluated and placed on the liver transplant waitlist.

She was on continuous feeds through an NG Tube. This came out and her blood sugar dropped very low very fast. Maddie had a controlled blood sugar test at the hospital. She could only go 20 minutes without her feeds.

We went home and about 20 minutes later we RECEIVED the CALL!

Maddie received her second chance at life from her hero, organ donor on November 17, 2017.

She has had a very rough road post-transplant with portal vein thrombosis, stents places, PTLD, adenoids and tonsils removed, hearing loss due to jaundice, biliary strictures, etc.

Despite all of this, she is the happiest, sweetest, smiliest warrior! Her smile lights up a room, and her positive outlook on life is so wonderful! We are thankful each and every day for her hero and the whole team at the hospital.

Through ALF, we have met a lot of other families who have been in our shoes and families just starting the liver journey. Having others to talk to, lean on, cry with, share stories with, has helped so very much!

Our advice for other liver patients or families in the liver community is to ask a lot of questions and go with your gut, always.

Supporting the fighters, admiring the survivors, honoring the taken, and NEVER, EVER giving up HOPE!


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