Bristol School community rallies around student with health challenges

/Contributed photos

/Contributed photos

Note: This story was contributed by the Bristol School District. — DH

Teachers, parents and students are rallying behind Bristol School sixth grader Seth Bayles.

Many in the community consider Seth to be one of the most positive kids they’ve ever met. Despite having several rare autoimmune diseases, he maintains a positive attitude and is involved in school activities such as band. According to Seth’s mom, Julie Bayles, his positive nature has affected the school community so deeply that a group of teachers and parents decided to help. Here’s how she tells the story:

“We first posted on Facebook that we would be collecting soda pop pull tabs to bring to Ronald McDonald House Charities (RMHC). RMHC exchanges the pull tabs for cash at local scrap metal processors. It took off from there. Another mom who I hadn’t even met before, Michele Degoey, stepped forward to say she’d help and worked with (Bristol principal Jeff) Terry to get the school community involved too.”

Eight hundred Ziploc collection bags were sent home and they received back way more than expected. They even received some pull tabs in ice cream buckets and cardboard boxes! The Bristol School District community really stepped up. Seth and his family hand delivered two car loads to the Ronald McDonald House at the Mayo Clinic in Minnesota with a third trip in the works.

Fighting several rare diseases over the years has taken its toll on both Seth and his family. Seth wears leg braces over his once normal legs. He takes more than 20 pills daily. For the past 5 years Seth has also endured injections every week to manage these diseases. There are about 7,000 rare diseases identified in the United States. About 80 percent are genetic in origin and it is estimated that about half of all rare diseases affect children. Rare diseases can be chronic, progressive, debilitating, disabling, severe and life-threatening.

It is a huge blessing for Seth and his family to be able to stay in a community environment like the one provided by Ronald McDonald House Charities. Their facility near the Mayo Clinic offers its guests living rooms, laundry facilities and most importantly a place to unwind. Julie commented,:

“It’s night and day different from living in a hotel room. Seth is in the clinic all day. The hotel is isolating because it’s not in our home state of Wisconsin. In the hotel, there isn’t much else you can do but watch TV. But with RMHC, you can get to know other kids that are struggling with health issues. The moms can connect as well as stay in touch with each other. The kids can be kids, share a laugh and share a pizza. It is a very bonding experience. At Christmas, they even had gifts for every member of our family, including our 6 other children.”

What’s ahead for Seth? Seth wants to be a pastor when he grows up. In the short term, his dream is to travel in a Recreational Vehicle with family and friends. It doesn’t even matter where; he is thrilled by the prospect of going on a journey with his family in an RV. Emotionally he just wants to stay home. Being separated from his family over the years of treatments has been tough. Between visits, Julie stays in close contact with the Mayo Clinic as she monitors his doses at home and helps Seth manage the symptoms to avoid the 5 hour drive one way as much as she can. It had been a long struggle to find a doctor to serve as Seth’s primary physician locally to help with this. Seth’s condition is rare, and it takes just the right doctor to work with another facility doing experimental medicine. Julie is happy to report that they just found a doctor in Racine willing to help as his local primary physician.


One Comment

  1. Lisa Grumbeck says:

    Amazing story. I too have suffered from autoimmune diseases since i was 13. My family and friends would like to start collecting pull tabs for you. Please let me know how to package them and where to drop them off at.
    Thank you
    Lisa Grumbeck

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