Jack has a rare, chronic form of allergies called Eosinophilic Esophagitis (EoE). We are raising money for research & patient care.
This year, I've once again joined the Miles for Miracles Team Extra Mile because I believe so strongly in all the amazing things Boston Children's Hospital does for kids. On October 1-2, 2021, I will complete a 1 mile run at the top of the hour for 31 hours in my neighborhood to raise funds for Boston Children’s Hospital's Eosinophilic Gastrointestinal Disease Program for research and patient care.
7 years in…
Progress: Looking back at last year brings a flood of emotions. For all of us. What have we been through this past 18 months!? Besides the obvious pandemic, we look back at 2020 and reflect on 2 influences that shaped our year.
The first was Jack finding out that a new medication was working and changing his diet drastically. Just two days before the schools (and the country) shut down, Jack went in for his 8th endoscopy. We were on the verge of a worldwide pandemic, but we were determined to find out if this medication was working.
In October 2019, long before we heard the words Covid or pandemic, Jack started taking a new daily medication and started eating foods with wheat. If the medication was working, he could enjoy chicken nuggets, donuts, pasta, and of course Oreos(!!) while we waited the 2 weeks for school to re-open. Ha! Well, he did pass that endoscopy, the medication was working, and he continued to eat all the gluten filled foods eating us out of house and home during 422 days of remote schooling. Progress.
Before the medicine, Jack was on a restricted diet of no eggs, soy, wheat, dairy, nuts, & fish. This medication has now allowed Jack to drastically change his diet, not only is he eating wheat but now he’s able to safely eat eggs, soy, wheat, nuts, & fish. This has been game changer. He’s put on over 30 lbs. and 6 inches and has grown into a great athlete, even joining his freshman football team this fall. We are taking this progress one day at a time with a positive outlook each step of the way. The ability for this to be possible is solely because of the care he receives at Children’s Hospital and their unending drive to make life better for kids – one child at time. For us, it’s food but for others it’s so much more. And that fact is not lost on us.
The second unexpected outcome of 2020 and perhaps our favorite 2020 experience, was our BCH fundraiser. My fundraiser was a scheduled 50K (31 mile) race that was cancelled due to the pandemic. We heard about a neighbor who ran 1 mile every hour for 26 hours on the day she should’ve run the Boston marathon. What an incredible idea! Normally I would be running some ridiculous distance either in circles at a track or through some ungodly mountain or trail. This year we were forced to think outside the box. Start from our driveway and run one mile every hour for 31 hours. Sleep outside, fire pit, cooler of beverages and anyone who wants to run a mile with me could. And they did! In 31 hours, through the middle of the night, I had only 2 miles where I ran alone. It was another testament to the support we have always been given. A new fundraising idea was born in 2020 and we are planning to do it again in 2021. On October 1-2, I will run 31 miles for Boston Children’s Hospital, one mile at a time.
Thank you for continually being so supportive of our fundraiser, our passion, our run, and of Jack!
Steen Family
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EoE is an allergic reaction that causes inflammation and damage to the esophagus, the muscular tube that connects mouth to stomach. With EoE, there are a large number of white blood cells called eosinophils in the esophagus.
Not all allergic reactions are immediately noticeable. Most people have heard of allergies that require emergency treatment, but many allergic reactions come on slowly, with delayed symptoms. EoE is one of these reactions.
EoE may affect a child’s ability to eat – both physically (a swollen esophagus makes it hard for food to go down) and psychologically (a child may grow to associate eating with discomfort). It’s usually caused by a food allergy.
Informational video: https://m.youtube.com/watch?v=YiL-o7HXKQs
