Me and my son, Eli, are Luchablue, the 2021 Indianapolis Colts Fan of the Year duo and 2022 Indianapolis Colts Hall of Fans members! We are on a mission to help raise awareness for Alagille Syndrome (ALGS) and help fund critically needed scientific research.
We need your help!
Our family has traveled from Hobart, Indiana, to Indianapolis since my son Eli was born for medical care at Riley Children's Hospital for Alagille Syndrome, a rare cholestatic liver disease affecting some to all organ systems including liver, kidney, heart, eyes, vascular, and skeletal. Alagille Syndrome can have a very heavy burden of disease full of hardships due to a loaded appointment schedule, round the clock medications, physical setbacks and limitations, transplant and other invasive surgeries and repairs, and much more. It is also considered a rare disease. Our family's love of the Indianapolis Colts made trips for medical appointments more fun. Stopping off at Lucas Oil Stadium, joining a Colts community event, or heading into the Colts Pro Shop were tagged onto each appointment, strengthening our love for the team and helping turn a hard situation into something to look forward to.
We have been personally affected with the hardships that come along with Alagille Syndrome. Eli had many rough years with progressive liver disease and needed a liver transplant due to his declining health and severe itching associated with his diseased liver. He was transplanted in 2019 and given the gift of life.
Having a transplant doesn't cure or take away the syndrome as a whole and Eli will continue on a journey of medical challenges throughout his life. Because of our experience with Alagille and the intense liver transplant, supporting critical science and research for ALGS is very personal for us. Eli has had just an amazing outcome with the transplant and is doing so well, but many Alagille patients are not. Together, we are very motivated to make sure there's always a light shining on this ALGS in the public eye so all Alagille Syndrome families can have hope for a better future.
Currently, there are no therapies for Alagille Syndrome. We recently had our first FDA approved drug for the severe and debilitating itch that accompanies the liver disease. This was a big win for our community but we will not stop there. We need more science. We need more treatments. We need therapies. We need a cure.
Help us reach our goal of $25,000 for Alagille Syndrome science and research by doing any of the following:
1) Join the LUCHABLUE CAMEO CAMPAIGN. Send a personalized message from Luchablue to someone you know for holidays, birthdays, get wells, and anniversaries! Make a $50 donation and follow the prompts to send a Luchablue message. So FUN!
2) Donate any amount meaningful to you. Every dollar counts!
3) Give a corporate donation to the Alagille Syndrome Alliance using this link along with a personalized message.
MUCH LOVE to our LUCHABLUE fans and supporters!!