The Alagille Syndrome Alliance is a non-profit support network for people affected by Alagille syndrome, a rare genetic disorder. Alagille can affect multiple organ systems of the body including the liver, heart, skeleton, eyes, and kidneys. The symptoms and severity of Alagille syndrome can vary from person to person. My niece, Charlet was born in 2008, she spent some time in NICU for further testing once bloodwork came back abnormal. She was released with 2 possible diagnoses. Both diagnoses were rare so we had to see specialists and perform many many tests to be diagnosed properly. At 8 weeks, Charlet underwent her first surgery. After recovery of heart surgery, we moved onto diagnosing her liver dysfunction. After the biopsy findings of a paucity of bile ducts leading to the confirmation that Charlet was diagnosed with Alagille Syndrome.
This diagnosis was also confirmed by a number of other features that come with Alagille: jaundice, severe itching (pruritis), butterfly vertebrae, thickening of the ring that normally lines the cornea in the eye (posterior embryotoxon) and distinctive facial features such as deep set eyes and pointy chin. We've learned so much about life, love, and giving from our Charlet.
Six years ago we started to raise funds for the Alagille Alliance Online Fundraiser. Annually we raise funds for the network and now partial funds go toward Charlet’s outrageous medical bills. Our fundraiser is a fun-filled day at a local park with food, friends, family and amazing prizes donated. Park Playday have about 125+ attendees, we can feel the love and support from all around. The tricky tray raffle is always a success and everyone is always thrilled just being there. We are so thankful to all our sponsors such as Tend Insights for donating the amazing Minion Cam. There were many participants that were interested in a chance to win the Minion Cam. The winner was beyond ecstatic that they won!
We here at charLET’S Fight want to thank everyone at Tend Insights for their generous donation and support! You have a lifetime customer from us!
Veronika Byers / ALGSA Warrior