When Quinn was about 10 days old, I noticed he was vomiting significantly more than what could be considered normal.
At first, the doctor discounted it as "spitting up." Then he thought Quinn had acid reflux. Yet, as Quinn struggled with every ounce of food, it quickly became apparent that something else was wrong.
He was diagnosed with failure to thrive and later with eczema and asthma. We began making weekly visits to the doctor and trips to see specialists all over Washington.
At seven months, Quinn received another diagnosis — Eosinophilic Esophagitis, a serious allergic inflammatory condition affecting approximately one in 2,000 children. Eosinophils are a type of white blood cell that in a healthy immune system protect our bodies from infection. Quinn's Eosinophils mis-identify food as a parasitic infection and cause him to have pain, inflammation, nausea, vomiting, dysphasia and other serious complications.
Prior to Quinn’s diagnosis, we took feeding our kids for granted. I breast-fed all my children because it was the best and most economical choice for them. But in Quinn’s case, we were told the only formula that could treat his disease cost in excess of $1,000 per month. Many insurance companies do not provide coverage for formula, so we were tossed into a morass of state agencies and insurance red tape trying to figure out a way to feed our baby the only food he could tolerate.
Quinn reacts to beef, chicken, coconut, corn, dairy, fish, rice, wheat, rye, soy, barley, oats, citrus, peas, tomatoes, cauliflower, watermelon, cranberries and maltodextrin — the sheer number of things Quinn's body reacts to is daunting. Plus, many of these substances are also in non-food items, making normal activities like playgroups and Sunday school almost impossible. We have to worry that Playdough is made of wheat, glue has gluten, and more.
Quinn also has issues with aspirating small amounts of vomit into his lungs. He has had pneumonia three times in the last 18 months. Each time he has pneumonia, it can cause damage to his lungs.
Quinn’s diagnosis has affected all of us. It was stressful for Alex, my oldest, to see his baby brother go through test after test. While his friends were enjoying junior high, Alex spent a lot of his free time doing the piles of laundry that come with a very sick infant. Honestly, I don't know how many things he missed out on because he isn't the type of kid to complain. I do know that like the rest of our family, he had more trouble sleeping and he smiled a lot less. It was even tougher for my daughter, Clarity, who was often anxious and sad about Quinn and how drastically our lives had changed.
I remember looking at pictures of our friends’ babies having their first fistfuls of birthday cake and thinking Quinn would never get to enjoy the sticky mess. Or pizza parties. Or holiday dinners. My husband and I went from discussing movies, books and music at the dinner table to talking about EOS counts, clinical trials and medication side effects.
We learned about Starlight in the summer of 2010 after attending a conference on Eosinophilic Disorders. Another Starlight family told us about the Great Escapes program and how helpful attending these family events was for them.
Our first Great Escape with Starlight was at a college football game. I admit I was a little skeptical at first — how could going to a ballgame really help my sick child? However, the football game was the first time Quinn had ever gone on a long car ride that didn’t end with him being poked or prodded. The look on his face when we took him out of the carseat and wheeled him into a crowded stadium was priceless. I completely understood then what Starlight’s Great Escapes program is all about!
Starlight reminds us that we are a family, not a diagnosis. Our calendar used to revolve around doctor appointments, medical procedures and other "necessary" events. Those things are still on our calendar, but interspersed with Great Escapes that give us a chance to set aside our fears and frustrations and just refocus.
Starlight Mom Rhyannon