Natalie Williams, 14 and pictured with her dog, has a rare and  life-threatening childhood liver disease called Biliary Atresia. The condition affects approximately 1 in 16,000 infants shortly after birth.  Biliary Atresia is not hereditary.  There is no known cause and there is no cure.  Natalie had a major operation called the Kasai procedure at 9 1/2 weeks old and has yet to have a liver transplant.

Natalia works on the Biliary Atresia Awareness and Research page on Facebook and has started this charity — sher is a Teen Patient Advocate, making amazing videos and picture collages to raise awareness for BA!

A note about our dear Natalie. She keeps fighting this disease while informing us of other children with it. She makes amazing videos and picture collages. She’s a wonderful gift to our community. My son is 18 and has Biliary Atresia. I spent most of his life until only recently without contact with parents of children with this disease. Thanks to Natalie, I have found a bond with parents I can help and give hope to. My son just graduated from high school in May. This is hope to all parents who keep track of minute numbers, medications, trips to the hospital, how many endoscopies a child has.  Natalie is truly a hero.  — Katie Fitch

Keep up the fight Natalie — you are a true advocate and an inspiration to all!

3 thoughts on “A Teen Fighting Biliary Atresia Is The Ultimate Patient Advocate — Meet Natalie Williams”

  1. Shayna says:

    We just had our son’s kasai surgery Friday. He is 12 weeks old today. Trying to find more information and support for us. This has been a whirl wind 2 weeks from him being fine to bring yellow needing blood work to finding out about the problem. Just found your post and the Facebook page. Thank you!

  2. Good Morning Shayna!

    Your request has been forwarded to our Disease Detective Program, of which will be responding to your request shortly. All our best to you and your son.

    – The Global Genes Team

  3. Shelley Nash says:

    Thank you for the story of Natalie Williams, 14 with BA; it is good to hear of Katie Fitch’s son, 18, with BA also! My daughter is 15 with BA. We also have not been able to find other parents and their teens with this condition, so I would welcome any emails. Thanks! Shelley Nash

Comments are closed.

X