Gideon, The Little Warrior

The story of Gideon

I could lie and say Gideon started his life as an easy baby, but I will not. Gideon started his life with a BANG. He was born unable to breathe and with extremely low blood sugar– because he wouldn’t have it any other way than to start life with a whirlwind of adventures.

Things at home continued with the pattern from the hospital–projectile vomiting, paleness, crying, and lots more crying (both him and us). So, we did what any good parent would do: we called our pediatrician– another true hero in our story. She did her exam, and the next thing we knew, we were getting labs and urine samples and expecting a trip to the emergency room with our “fever-ish” brand-new baby. Only–his fever disappeared within the hour we were at the doctor’s– cancel that hospital visit. We went home as usual but with reflux medicine for the upset belly and brand-new baby formula to supplement with!

As he grew and we fed him new foods, he would get very sick, vomit, and go pale. Cue diagnosis one– FPIES. Thankfully, it is no longer considered rare, which means newer treatments and more research!

Yet, something still wasn’t quite right… he caught every illness on the planet from two months on. I mean EVERYTHING. We practically lived at the pediatrician’s office (and still do). He was put on every antibiotic under the sun for ear infections, bacterial respiratory infections, more ear infections, skin infections, and mystery fevers– you name it, he’s had it. After countless hospital visits, just never catching a break from being sick, and constantly being malnourished… we catch our big break…

We see the FPIES Clinic and Immunology at the Children’s Hospital of Philadelphia. After lengthy and very necessary bloodwork, we get our rare diagnosis of Primary Hypogammaglobulinemia and get a referral for a gastronomy tube. We cry– what he has has a name. We are a zebra in a world of horses!

Living with a child with immunodeficiency is not easy. We constantly worry that our daughter will catch something at school and bring it home to him because it is inevitable. When Gideon shows signs of fever and sickness, we head to the pediatrician, who always listens, takes it seriously, and helps with anything she can. She knows some germs are too big for him, and he can go from zero to one hundred in the blink of an eye.

Gideon experiences a lot of disadvantages due to his illnesses. He is not as physically strong as he could be, doesn’t speak as well as he should, and doesn’t eat as much as we would like, but he is the light of everyone’s lives. He never ceases to smile, laugh, or love his friends and family, but most of all, he looks up to his big sister, Florence.

We do our best to keep him safe and give him a normal childhood. As you all know, there is nothing ordinary about being a zebra. Gideon will continue to live through this disease, do his therapies (his many, many therapies OT, PT, and ST), play as hard as he can, but most of all, fight like the Little Warrior he is.