Carlie Hope was born about 4 weeks early on July 16, 2001 at 6lb 2 oz. Carlie was so petite, red and wiggly….just perfect. She was jaundiced at birth which led to coming home with a bili light and daily blood tests. We knew something was off when the hospital called us back for additional labs that showed some liver involvement. That began our journey of multiple doctor visits, labs, tests, scans and special formula. Oh, and rocking, lots of rocking because Carlie didn’t sleep…and was quite wiggly.
We were referred to a cardiologist and that’s when we heard the two words, Alagille Syndrome. At around 5 weeks old, Carlie Hope was officially diagnosed with ALGS. Along with the name, we had symptoms: reflux, fussiness, failure to thrive amongst many others to come over the years. Early on we battled sleepless nights, weight loss, ear infections and the dreaded itchies…..oh, those came on with a vengeance. Through the support of the ALGS Alliance we found a support system, doctors, families who knew what we were going through and an online community. We made it through the infant and toddler years and got thrown into school age years which brought on sickness, ear infections, tonsillitis and eventually more ear tubes, tonsillectomy and adenoidectomy. All the while, Carlie Hope was a happy young girl who loved animals, playing with her sister and friends and her health seemed to be smooth sailing. Then the middle school years came and hit pretty hard with multiple illnesses that kept her from school a lot. We found a wonderful private homeschool that really met her needs and Carlie began to thrive and love school again. She has had some ups and downs lately into her teen years with some new diagnoses such as chronic fatigue syndrome, Chiari malformation and dysau+tonomic neurocardiogenic syncope which has been quite challenging to navigate.
Carlie is almost 17, learning to drive, finishing up her Junior year of high school and navigating typical teenage stuff. She still loves animals, playing games with her sister and hanging out with her friends. We are so thankful for the ALGS Alliance for providing community, education and resources for our family as we continue to navigate this rare journey.– Carlie’s Mom, Traci