Amelia's medical bills, travel and lodging

In July 2023, Amelia was diagnosed with Very Early Onset Inflammatory Bowel Disease (VEO-IBD), which is a a rare form of IBD, only diagnosed in 15% of pediatric patients. We have been in and out of inpatient hospital stays since July. She has had 3 blood transfusions, countless iron infusions, bi-weekly rounds of Remicaide infusions, nightly doses of steroids (to help bridge the gap in between infusions), iron supplements and more tests and bloodwork than I can even count. Despite our best efforts, Amelia continues to have flare-ups, which cause mucusy, bloody and wet diarrhea, VERY intense stomach pain, dehydration, extreme fatigue, loss of appetite and hospitalization.

Amelia was recently admitted into the VEO-IBD clinic at CHOP, for genetic testing, nutritional guidance and (unfortunately) more testing, which includes more CT scans, MRI's and colonoscopies, her first appointment is scheduled for January 4, 2024. This clinic appears to be her best shot at living a normal life and helping us navigate this disease to help our baby live pain free. In order to be seen at CHOP, we need to travel back and forth to Philadelphia, staying in hotels while we see the doctors and get the testing done. With two other kids in school, traveling and hospital bills adding up quickly (as of now over 130k owed to HUMC, after insurance), I am kindly asking for some assistance so we are able to bring her to CHOP for these very important tests to help her have a better, pain free life. I have added a link below if you would like to read more about this autoimmune disease and quality of life for children diagnosed.

"Very Early Onset Inflammatory Bowel Disease (VEO-IBD), defined as disease in children less than 6 years of age, is often a severe and debilitating form of IBD with distinct characteristics (overlapping frequently with immune deficiencies and other rare/orphan diseases). These children often fail to respond to conventional therapies or surgery."

https://www.chop.edu/centers-programs/very-early-onset-inflammatory-bowel-disease-veo-ibd-program