Support Shiloh’s Fight Against Rare Food Allergy (FPIES)

This isn’t easy to write, but we need help.

Shiloh was born on December 13, 2024, after four rounds of IVF. He’s our rainbow baby, and we’re so grateful for him. From the very beginning, we knew something wasn’t right. He wasn’t sleeping well, cried often, and was vomiting multiple times an hour. It didn’t seem like normal spit-up. It was happening too often and too forcefully to ignore.

I was breastfeeding, but by June 23, my supply couldn’t keep up with what Shiloh needed anymore, and we started to supplement with formula. The next day, Shiloh became more lethargic and his poop turned gray. That was the moment we knew something was seriously wrong.

We immediately took him to the pediatrician, and they found blood in his stool. They suspected a cow milk allergy and told us to switch to a “dairy-free” formula. We later learned that it still contained milk proteins. Shiloh’s symptoms worsened. He kept vomiting, had mucousy diarrhea, became more and more tired, and started to lose weight.

We asked for bloodwork and more thorough testing but were told to wait and see. It was incredibly hard to feel like our concerns weren’t being taken seriously. We started searching for an allergist on our own and got in the next week.

The pediatric allergist diagnosed Shiloh with FPIES — Food Protein-Induced Enterocolitis Syndrome. FPIES is a rare allergy (0.3%-0.7% of the population) that affects the digestive system, not the skin or lungs like most food allergies. It causes vomiting, diarrhea, blood in the stool, and extreme fatigue. In severe cases, it can lead to dehydration and shock. One of the most difficult things is that reactions can be delayed. A child might tolerate a food once or twice and then have a reaction the third or fourth time, which makes it incredibly hard to identify triggers. In the meantime, Shiloh is miserable. We've scaled back introducing solids and we are trying to work out a game plan.

The allergist described regular formula as paragraphs. The "dairy-free" formula is broken down to be like a sentence. Shiloh can tolerate letters. The allergist prescribed PurAmino, an amino acid-based formula that is fully broken down and safe for babies with FPIES. Right now, Shiloh will only drink it when it’s mixed with breast milk. It is slow going because it is a gradual increase. Because Shiloh feels sick, he wants to nurse even more. My breast milk was making him sick. I’ve had to eliminate dairy, soy, and gluten from my diet to reduce any possible exposure. It’s been hard to find safe food to eat, but I’m doing my best to keep breastfeeding. Those ingredients are in everything and I never realized that even food labeled as having "natural flavors" contains dairy....

We’ve already used every resource available to us. Our FSA is completely drained, and we’ve cut back everywhere we can. To be fully transparent, we can't afford this formula. A 14oz can costs between $50-$60......and that will last him about 3 days.

Some children with FPIES grow out of it by age 3-4 and we hope Shiloh is lucky.

We are raising money to cover:

1. One year of PurAmino formula

2. Ongoing medical visits, testing, and copays

3. Safe food and supplements so I can continue breastfeeding while we carefully switch him to this new formula

4. Any extra support to help keep our family stable while we care for both of our boys

We love our kids more than anything. We just want Shiloh to feel good in his body, to grow, and to thrive.

If you can help in any way, through a donation, by sharing this, or just by keeping us in your thoughts and prayers, we are truly grateful.

Thank you for being here and for caring about our family.

With love,

Jona and Josh