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 April 25, 2020 I will complete a 50K run at the TARC Spring Classic Trail Race in Weston, MA to raise funds for Boston Children’s Hospital's Eosinophilic Gastrointestinal Disease Program for research and patient care.
6 years in…
Time. In many ways, time passes so quickly. As the saying goes, the days are long, but the years are short. This year, we are approaching the point where Jack has lived with EoE longer than he hasn’t. He continues to be challenged with his top 8 elimination diet (wheat, dairy, soy, egg, nuts/tree nuts, fish/shellfish) but this duration in time has brought more research. And research has brought more treatment choices. Jack is now trying a new medication. Boston Children’s Hospital recently published a research study specific to this medicine, one of the first research articles on this. It is safer and better tolerated than what was available 6 years ago. We are hopeful this will allow him more freedom and independence down the road.
Time and research have also brought new ways to test for EoE. Currently, when Jack undergoes a change to his treatment plan (changes in food or changes in medication), he has to have an endoscopy to see if he’s reacting to the change. This requires general anesthesia. We’ve lost track of how many he’s had…6, 8, 10? Time and research, and let’s be honest, funding…SOME OF OUR FUNDING, YOUR FUNDING, have allowed the GI doctors at Boston Children’s Hospital to train on a new way to do these endoscopies, called Transnasal Endoscopy (TNE). This doesn’t involve general anesthesia. Which means, less time for the test and recovery and generally lower risk.
We think of the time ahead. There have been many advances in research, which makes us hopeful. And makes us thankful. Thankful to all of you who have been so supportive of our goal to help fund research initiatives specific to EoE. EoE is classified as a rare disease and a newer identified disease, which historically lacks funding for research. Over the past 6 years, we have raised over $40,000 directly for research and patient specific funding for the EoE clinic at Children’s Hospital. Jack is directly seeing the benefits of this research.
Thank you for continually being so supportive of our fundraiser, our passion, our run, and of Jack!
Steen Family
------------------------------------------------------------------------------------------------------------------
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