Ali’s Angels

We are starting a Go Fund Me for our dear friends, Dave and Andrea Forgue, and their children: Liv (10), Sam (6), and Ali (1).

Alexandra (Ali) Joy Forgue was born on December 12, 2020, at a mini 4 pounds, 15 ounces. At birth, she had breathing issues, which resulted in a nine-day NICU stay with a chest tube. She was discharged healthy but started showing signs of GI distress at 2 weeks. Her medical journey hasn’t stopped since then. When she was 6 months, Ali was diagnosed with TBL1XR1-related disorder. TBL1XR1 is an extremely rare genetic disorder where little is known as it affects every patient differently. Fast forward six months… Ali celebrated her first birthday, but that milestone came with many challenges. Ali suffers from both Crohn’s Disease and colitis from recurring CMV, obstructive sleep apnea, feeding, hearing and vision issues, and brain and heart abnormalities. She has had multiple hospital stays, five colonoscopies, a picc line, blood transfusions, and a g-tube… just to name a few…

All the hardships aside, Ali is very happy and playful, so the parents trust this means she is not in too much discomfort. She is gaining weight and getting stronger, so she must be getting the nutrients and vitamins she needs. Currently, Ali weighs around 16 pounds. While she is still a teeny tiny bean, she has finally made it on the growth charts. Ali is a social, curious, snuggly, determined 15-month-old. She loves sitting and pulling herself up to stand, rocking to music, catching balloons, knocking down cup towers, army crawling toward any phones or tablets in sight, and doing anything that involves her big siblings, Liv and Sam.

If you ask how she is doing, please know that it is never an easy or simple response. “Better” does mean some things are better, but not all. Ali has a condition that can and does change to “not so great” and “struggling with this and that” in a matter of a few hours. Neither her Crohn’s nor the rare genetic variant will go away and often leaves Dave and Andrea with more unknowns than answers. They don’t want to share bad news but telling only good news doesn’t feel authentic. Plus, to downplay Ali’s challenges and all she has been through would also underestimate her strength and perseverance. Whether Ali is doing well or struggling, the details are long-winded, complicated, and full of hard-to-digest medical terms.

For those of you that have been following Ali’s fight, thank you for all the love and prayers. To those that want to do more, please consider donating to this fund. We want to support this amazing family. Here is a way to help the Forgue family during this uncertain journey. Let’s lighten their load as they work their way through the unknown.