“I’m pretty boring.” This was the answer Liz Chamberlain gave in response to me asking what her favorite hobbies are. However, I was unable to ask Chamberlain face to face, as we conducted our interview through instant messenger due to her busy schedule. It took me very little time to realize just how busy, and humble, this soon to be 15-year-old really is.
When this article originally came across my desk, I was informed that Tom Finch Automotive out of Jacksonville was donating $5 from every oil change during the month of May to send a young girl from the community to Muscular Dystrophy Association’s summer camp. It was through a little research that I found my way to Chamberlain. Well, sort of. When I reached out, I learned that she was not only home schooling, attending Choir class at Jacksonville High School, but she was also getting ready to head to Chicago to attend Arlington Heights Fire Department’s MDA fundraising event and well as the Chicago Muscle Walk.
But just what is Muscular Dystrophy? According to Chamberlain, who technically has Spinal Muscular Atrophy type 3 , this means that her ‘nerves don’t tell my muscles to move, so they waste away”. According to the Mayo Clinic, Muscular Dystrophy is a group of genetic diseases that cause progressive weakness and loss of muscle mass. The disease is rare, with fewer than 200,000 cases diagnosed in the United States per year. Chamberlain was misdiagnosed three times before finding the Muscular Dystrophy Association where they sent her for testing and diagnosed her at age 9. It has left her relying on the use of a wheelchair as her means of mobility.
What would have the potential to break the average person’s spirit, let alone someone so young, doesn’t deter Chamberlain from a challenge. In fact, it’s apparent through speaking with her that she is fueled by helping others. She is an ambassador for the Muscular Dystrophy Association, which leads her on travels all over the state raising money for the cause. She has been involved in media events, district meetings, worked with fire fighters for “Fill The Boot” campaigns, summer camp programs, among many others. The list goes on and on, and when telling me about all of her charitable work Chamberlain speaks of it as if it was nothing out of the ordinary. While most parents are working hard to get their teenagers to do chores, Chamberlain is singing the National Anthem at major sports and charity outings and attending dinners to raise money out of the goodness of her heart.
When asking Chamberlain to tell me about the MDA Summer Camp, which is held July 9th-15th in Bloomington at Timber Pointe Outdoor Center, she goes on and on about all the activities the camp offers. The camp is all accessible for ages 6-17, and while it costs $2000 per camper all of the fundraising people like Chamberlain and businesses like Tom Finch Automotive do, it allows everyone to attend free of cost. Going into her 6th year at the camp, Chamberlain explains “It is a week of ‘I can’, not ‘I cannot’”. She gets to hang out with people her own age who understand what it is she goes through. She has a counselor assigned just to her, as each camper does, who helps to allow her to be a kid for once. The kids get to ride motorcycles, horseback ride, go boating and canoeing among many other activities. The final night culminates into a formal dinner and dance.
In asking her who her hero is, Chamberlain tells me her deep appreciation for fire fighters. She talks of the fundraising many departments have done for MDA, countless talks she has had with the men and women of numerous departments, and how they take no credit for the work they do. “That’s what they do every day, in and out, to help people and save lives. When I thank them they say ‘oh it’s nothing’ or ‘it’s just a little thing’. They don’t take credit for how much they help me and other MDA families. They don’t ask for attention or credit or fame. They are the most amazing people.”
There is an old saying, “you are the company you keep”. It makes a lot of sense for Chamberlain to look up to men and women who are much like herself. While she may not consider herself a hero, what she does for others speaks volumes about the spirit inside her. At just 14, she humbly perseveres on no matter what obstacles she faces, making it her life’s work to help others. She may not be a fire fighter, but she is a fighter, and there is a lot of fire in her. So much so, it was hard to remind myself that I was in fact interviewing someone who is technically just entering her freshman year of high school.
When I asked Chamberlain what she would like to tell the world, she actually had to remind me of just that, saying “I don’t really know at fourteen”. She then proceeded to tell me that what she does know, is that it doesn’t matter if you are in a wheelchair or have any other type of disability. That in life we need to treat each other with respect, kindness and love and to always try to give more than we take. She may be only 14, but Chamberlain is wise beyond her years. Her drive and compassion is something most people hope to develop in a lifetime. She, like so many amazing people tied to her story, doesn’t take credit for just how many people she has helped through her dedication and hard work. The world is truly Chamberlain’s oyster, and while she may not know it all quite yet, there is one thing that I have no doubt of. Her story of compassion and generosity is truly contagious, and the world is better for having heard it.
Those wishing to keep up with Chamberlain’s charitable journey can check out her Facebook page, Lizzie Chamberlain- MDA IL GWA Emeritus. You can also go to www.mda.org for more information on the disease, how to get involved, or to donate.