A NWIndiana Life in the Spotlight: Mimi Burke

You cannot meet Mimi Burke and her daughter Sophia and not have your life changed forever in the most positive way. Sophia recently turned 13 and had a birthday party in which even the Crown Point Fire Department was in attendance. They brought their trucks so that Sophia and her friends could climb on them and tour them. This is not surprising, though. Sophia makes friends easily. She has an infectious smile and a wonderful sense of humor. Within a few minutes of being with her, you almost forget that there is anything different about her.

Sophia has Rett Syndrome, a neurological disorder that leaves its victims, mostly girls, unable to talk, use their hands or move around very well. Sophia is, however, able to see, hear and understand you. The disease also does not affect the mind. Instead, it breaks down the brain’s ability to properly communicate with the body. So, imagine having a fully functioning brain trapped inside a body that doesn’t work. This is Sophia’s life.

Rett babies like Sophia are born normal and healthy but start showing signs of the disease when they are around 6-18 months old. It is a genetic disease but it is not hereditary. Every ninety minutes, another baby with Rett Syndrome is born.

“With Sophia, I noticed around twelve months that she was not continuing to develop. She started showing signs of the disease around 18 months and it was originally diagnosed as cerebral palsy. There is no cure or Rett Syndrome. The best we can do is to treat the symptoms,” explains Burke.

Symptoms include hand wringing and not talking. Some girls with Rett Syndrome will live into their adulthood. In Sophia’s case, she is among the one percent of the most severe cases. She is medically fragile and has almost no immune system. Over a year ago, she was diagnosed with CVID, or “common variable immune deficiency”. The common cold can easily turn into a life threatening case of pneumonia for Sophia.

“Every little thing is a huge battle for her,” explains Burke. “The doctors all know ahead of time that every minor surgery performed will involve a stay in the intensive care unit. Each new diagnosis is gut wrenchingly hard. She sleeps with a breathing monitor and I always think every night could be her last. But, actually, this is true for all of us.”

Being in and out of the hospital has been difficult on Burke, but Sophia seems to take it in stride.

“Sophia has endured so much. She does it, though, with dignity and grace and without complaint. And trust me, she can complain,” jokes Burke. “Just because she cannot speak does not mean she cannot communicate her feelings,”

Sophia is fortunate in many ways, though. She is surrounded with teachers and therapists who work hard and who fight for her. Sophia is provided with 2 hours of instruction per week. She cannot be tested like other students. Still, she often surprises people.

“Her instructor asked her to count the number of legs on the deer shown. Sophia kept insisting the answer was eight when the instructor saw only four. She didn’t realize that Sophia was also counting the legs of a deer that was barely visible in the woods,” Burke explains.

Mimi Burke is one to count her blessings. Still, she cannot help but think about the dreams she has for Sophia.

“I want her to have the same experiences as other girls her age. I want her to go to high school and junior dances and to play with her cousins.” says Burke. She also adds this bit of optimism, “In 2007, they reversed Rett Syndrome in a mouse and they are starting to test that on girls. There will be a cure in my lifetime but probably not in Sophia’s lifetime. That really hurts.”

Burke also offers this advice to people when meeting Sophia.

“Don’t be afraid to ask me questions. Don’t be afraid to talk to Sophia. She wants to be talked to and interacted with. It’s more offensive to us if you ignore her. One of the worst parts about this disease is that it makes you feel alone.”

Current projects for Mimi Burke and Sophia include raising money to purchase a used van with less mileage than their current van. The van they are using to take Sophia for treatments has close to 200,000 miles on it. They also host a “stair climbing” fundraising event each September in Crown Point to fund necessary research. If you are interested in contacting Mimi Burke, you may do so at calnsophie@gmail.com