Thursday, February 29, 2024 was a leap year day. We all know that. But you may not know that Thursday was also Rare Disease Day, an observance held on the last day of February every year to raise awareness for rare diseases.
This year, since Rare Disease Day landed on February 29, the rarest day on our calendar, it took on extra significance. That was especially the case for a young DeWitt Rd. Elementary School student, who celebrated the day in a special way.
Eight-year old Lukas Urbanski, a student in Amy Woeller’s DeWitt Rd. third-grade class, commemorated Rare Disease Day by sharing with his class a book he’d written about his own rare disease. Sitting in the front of the room during “morning meeting” time, surrounded by his classmates, invited guests and his parents, Lukas read his autobiography, The Story of Me.
In the book, Lukas explains that he has CLIFAHDD, a syndrome which affects only 100 kids worldwide. He writes how he often has to go to the hospital, describes the different medical procedures he has to endure, and the special equipment he uses to help him through the day.
More than 140 photos splashed across the 27-page book illustrate Lukas’ journey. In several, EEG leads are attached to his head; in others, his head is wrapped in bandages, he’s wearing a mask which helps him breathe at night, or he’s sitting in a wheelchair.
Lukas’ mother Suzanne Engel said that in addition to raising awareness for rare diseases, the book is designed to demystify Lukas’ issues, and help his classmates understand that “everyone is unique and different, and we all need different supports.”
Creating a book was the ideal way to share that message. “Lukas spends a significant amount of time in the library and he loves to read,” Suzanne said. “When we started talking about how to tell his class about what he needs, it kind of seemed natural that it would be a book.”
But Lukas’ story doesn’t begin and end with his medical procedures. That’s why the first half of the book is filled with photos illustrating how, in many ways, Lukas is very much the same as his third-grade classmates.
There are pictures of Lukas riding a horse, visiting his family, and eating ice cream. He’s at amusement parks, baking and celebrating a birthday. And there are lots of photos of Lukas with his friends at school. They’re all great illustrations of how we’re all different, but we’re also the same in so many ways.
Writing the book and reading it to his classmates, however, wasn’t the only way that Lukas helped spread the word about rare diseases. Earlier in the month, Lukas approached several local businesses, asking for their support to bring awareness to rare diseases. As a result, Ridge Donuts, Schutt’s Apple Mill and Secret Ingredient Cupcakery all baked special zebra-colored cupcakes and donuts which they sold on Feb. 29. (The beautiful but unusual zebra is the symbol of Rare Disease Day.) All proceeds supported rare disease research.
“Lukas has captured the heart of the bakeries,” Suzanne said. “He’s created such a connection with the community. It warms your heart to see the community being so wonderful in recognizing rare diseases.”
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How you can help
Rare diseases don’t get the kind of attention or research dollars as do more common diseases. So, faced with the challenges of finding treatment for their son, and at the urging of a doctor at the Children’s Hospital of Philadelphia, in 2023, Lukas’ parents Suzanne Engel and Dave Urbanski partnered with a family in Texas to found the Channeling Hope Foundation. Supported by a global network of NALCN scientists and a small but mighty community of affected families, the Channeling Hope Foundation works to advance care and develop treatments for children affected by NALCN genetic disorders.
For more information about the Channeling Hope Foundation and how you can help the cause, click here.
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(posted 3/1/2024)
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