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Nelson's Story

Meet Jude!

Our two-year-old son Jude has Alagille.  I’m amazed at how the ALGSA community has helped our family on our journey.  I have come to know many other kids and families that share this condition and consider them my “Alagille Family “.  We keep in touch through social media and it has been a Godsend!

I first connected with ALGSA Board Member Anna Laurent on the ALGSA Facebook page.  It turns out Anna was originally from a town not far from where we live.   I was excited to see if she was in town so we could meet! 

In late December Jude, my daughter Audrie and I got to meet Anna and her father.  It was so heart-warming to meet Anna.  She is a spirited young adult ALGS Warrior who is FULL of life & perseverance!  It was also great to meet her father, a parent who has been through the trenches, who has walked in our shoes and is still such a wonderful advocate, educator & helper.

Our visit helped me to see that no matter the diagnosis, you CAN thrive! I am so very thankful & grateful to have met this sweet family.  We are ALL in this together!

-Jude’s Mom, Nicole

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Sammy

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I am Heidi and my husband is Tim. We have two boys, Joseph is 3 and Sammy is 2. We live in Northern Utah. Sammy has Alagille Syndrome. We haven’t had genetic testing done, so we don’t know if Joseph does or if it came from either of us.