The story of Sarah
My daughter Lily was born January 2024 perfectly healthy. By 4 months old, we started to think something might be wrong. She had concerning diapers and it was determined she had a cows milk protein allergy based on testing. Fast forward a few difficult months – she started solids. She started to have difficulty sleeping and would scream in pain for hours at night. That is when FPIES started “entering the chat” with her pediatrician, though it wasn’t a typical/acute FPIES reaction. Her first acute reaction happened shortly after with avocado. She had tried it 6 times before, with no issue. But this time was different. 3 hours later, while at daycare she reacted. She vomited 10 or more times, became pale and lethargic to the point of unconsciousness. Thankfully an urgent is within a mile of daycare, and we brought her right there. She remained sleeping for an hour or so after she stopped vomiting (which was due to injected zofran). This reaction happened on a Friday. Monday, we decided to give her pears which she had also had several times. 3 hours later we were back at urgent care for the same acute reaction. Lily is 14 months now, and has reacted to 9 foods so far. She has very few safe foods and has to rely on formula as her main source of nutrition. I am thankful for the many specialists in our hometown as well as the FPIES specialists at CHOP that have helped us navigate this disease. I am hopeful my daughter will start to outgrow some triggers and lead a more “typical” todder life and I am thankful for rare disease day to spread awareness for all rare diseases.