Katie’s Story

Site created on January 28, 2020

Hi everyone! As some of you already know, along with the multitude of severe food allergies he has, Leo has been dealing with some major gastrointestinal issues since birth. After 2 years of test upon test and specialist upon specialist we finally found out, a few months ago, that he has Eosinophilic Esophagitis (EoE). The short description is an allergic reaction in the lining of the esophagus that causes severe pain when eating which is why he’s had such difficulty with food. We finally have an incredible team of doctors at the Children’s Hospital of Philadelphia (CHOP) that are dealing with the EoE as well as the feeding issues and he is being admitted to their day hospital for least 4 weeks, possibly longer, for him to do an intense inpatient feeding program. We’ve tried outpatient and have had no success because even though the EoE is being treated and he shouldn’t be in pain anymore, his brain doesn’t know it’s safe to eat. So immersing him in multiple food therapy sessions a day as well as other therapies to help will hopefully get him to start eating better. Obviously this is going to be extremely difficult for us but we know it’s the right thing for Leo and are hopeful he’ll be eating us out of house and home before we know it!

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Newest Update

Journal entry by Katie Sanchez

Apologies for the long overdue update! Life this past month has been a wild ride as I know it’s the same for all of you. I hope this finds each one of you healthy and safe during this trying time. 

The biopsy results from the endoscopy on March 17th gave us both great news and not so good news. Leo’s esophagus is clear! Meaning the medication is still working and controlling the Eosinophilic Esophagitis. What a relief for us! The bad news is the biopsies of his intestines confirmed what the doctors already thought...he has celiac disease as well. So now on top of the EoE and food allergies- dairy, soy, tree nuts, beef, egg, coconut, sunflower, sesame, avocado, chickpea and cod- he is also allergic to gluten. This mountain of ours just got a little tougher to climb but boy are we grateful to our incredible team at CHOP for getting to the bottom of what’s been making our sweet bean suffer. 

Readmission to the day hospital is cancelled at this point due to the quarantine but we now have video appointments with Leo’s team which has been a great help. Although there have been some bumps in the road, he has progressively done better and better with eating since we’ve been home. He’s back up to the recommended volume each meal and most times he willingly takes all his bites!! We are cautiously optimistic that we won’t have to go back to CHOP for anything more than follow ups at this point! 

Words can’t begin to describe how grateful we are for our family and friends who sacrificed so much to help us and Leo get through this difficult journey. In the many moments it felt like this was too much to bear, you lifted us up and carried us through. Over and over again. To those that made the long drive down...many times or even one time, to those who prayed for us, to those who made us meals, to those who donated to the GoFundMe, to those that took care of Rocco and our house, to those that sent such thoughtful care packages, to our jobs and bosses who were so flexible with our schedules, a massive thank you from the bottom of our hearts. We have experienced love in ways we’ll never forget and are endlessly grateful to each one of you. We are immensely blessed to have a village of such extraordinary souls in our corner. 

With much love and gratitude, 

Aaron, Katie and Leo 

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