Many of us spend years trying to find a cause to move us to action, and we strive to make a difference. Well Kaelin Thomas is doing just that! At only 10 years old, Kaelin is making a difference in her community and beyond.
After learning about EB and how it affected those who face it each day, Kaelin felt a very strong call to action. She wanted to help educate others in her community about EB and the organizations who support families and research. As a member of the Elementary Honor Society, she had a opportunity to present to the Student Council, an opportunity to teach her peers about EB and hopefully inspire then as she has been inspired.
She has achieved this and more. Kaelin has sparked passion in her classmates to become part of something bigger then themselves. There are now several fundraising efforts within groups at her school and students are out educating others. Her presentation powerful and she now has the opportunity to present to the National Elementary Honor Society, which will hopefully open more doors for her and provide her with more opportunities to help others and make the world a better place.
I am so incredibly proud of Kaelin and her passion. She is making such an impact in her community and in the EB community as well! She is teaching those around her some of the most valuable lesson in life. She will do great things in her life, I have doubt.
Here is her presentation to the council…
Why I Refuse
Good Morning! Since we are coming to the end of the Student Council run, I wanted to talk to you about a great organization called I Refuse. We all know about places who help raise money for kids with cancer and other well known diseases, but I wanted to tell you today about a rare disease that not a lot of people know about. I Refuse was started by Christie Zink in Minnesota. She is a photographer who started to take pictures of small children that were born with a disease called Epidermolysis Bullosa, or EB, which is easier to say! This is a rare disease that causes a lot of pain and is eventually fatal.
EB means that the protein that holds the layers of your skin together are missing when you are born. This disease is genetic, so you are born with it, you don’t get it later in life. So, say someone grabs your hand or you brush up against a desk or wall. Normally nothing will happen to your skin or maybe you might get a bruise. If you have EB, you skin would tear or blister and it wouldn’t heal for a long time, if at all. You would be at risk for bad infections. Your skin would have to be constantly covered in bandages. You wouldn’t get to play like a normal kid. EB causes other problems too. Blindness and cancer are common in EB kids. It is really sad. EB kids are often called “Butterfly Kids” because their skin is as fragile as a butterfly wing. The slightest touch can cause a lot of damage.
The good news is that there are doctors who are finding new ways to help kids with EB. This is where the I Refuse Campaign helps out. In Minnesota, Dr. Jakub Tolar is researching and testing new ways to use bone marrow transplants and stem cells to help out kids with cancer and EB. He never quits trying to find a way to cure EB. He relies on the donations he gets for research. P.U.C.K (Pioneering Unique Cures for Kids) and I Refuse donate a large amount each year to help find a cure for EB.
Please look at my board here. These little kids are a small example of the kids who have fought hard against EB or who are still fighting EB every day. Look how small they are. I wanted to bring this to your attention because we need to let people know about this disease and how bad it is. We are the future doctors and scientists and we need to find a cure. We can make a difference in the lives of all EB families and it will also make a difference in each one of us.
Since the end of the year is coming up, I hope we can spread awareness about EB and maybe find a way to support the I Refuse campaign to help these kids. They deserve a chance to do what we do every day, play and run and hang out without being afraid they are going to get hurt or even living long enough to do these things everyday.
Thank you for listening!
So Kaelin, kudos to you, I cannot wait to meet you!! Keep up the amazing work you do, you are going places!!
Kaelin and her family will be taking their family trip to Minnesota in June to participate in Time to Fly. You can help Kaelin in her fundraising efforts by clicking HERE