Mimi Burke is a mother who has a story to tell. She wants to shed a light on what affects her daughter’s life every single day. Her daughter’s name is Sophia, she’s 16 years old, and she has Rett Syndrome.
Rett Syndrome is a debilitating neurological disorder seen almost exclusively in females. Girls with the disorder are typically born “normal” and healthy. They develop until they are about 6-18 months old, at which point they may start to lose many or all of their acquired functions and skills.
“They lose those skills as toddlers and I think that’s the hardest part. We don’t know what happened and we don’t know why,” said Burke. “Sophia is 16. She cannot eat by herself, so she has a feeding tube. She has seizures almost daily, and overall, she is very medically complex.”
Every 90 minutes, a baby girl is born who will someday bear a Rett Syndrome diagnosis. Statistically, one in 10,000 females are affected by the disorder.
“We live in Crown Point, and there are four girls in the city who have Rett Syndrome. I was mind-blown because there are 37,000 residents here, and four have the disorder. It goes right along with those numbers. When Sophia was diagnosed, we didn’t know a single soul about it. The awareness wasn’t there. People didn’t talk about it because they didn’t know how to talk about it,” said Burke.
Awareness is a big part of Burke’s heart. She wants to connect with the families to let them know they are not alone. She is passionate about helping those who are affected by the life-changing syndrome.
“We have to find these girls so we can help them. The parents need help and support so they are not alone. We want them to know that we have their backs,” said Burke.
Burke works with Girl Power 2 Cure. It is a dedicated nonprofit organization that brings families together who are affected by Rett Syndrome. They strive to educate and bring awareness to those who are affected, and those who are not familiar with the syndrome. Girl 2 Power funds research through their events, campaigns, and webinars because they strive to fight for a cure. They partner with Rett Syndrome Research Trust, and fund research that is crucial to developing treatments and a cure.
“Our girls can move mountains and they bring communities together. We need to believe in them. They are so smart, they have so much life to live and so much to teach us. I want people to take the time to listen, learn, and to teach it to someone else,” said Burke.
Burke encourages the community to come out and support her passion. She lives to help spread awareness about Rett Syndrome. She does it for her daughter and she wants to make a difference in changing her corner of the world.
“I want people to see our girls. Talk to them, not over them. So often, children with disabilities are overlooked. People don’t know if they can understand, so they talk over them instead of to them,” said Burke. “These girls can hear you, so talk to them. I believe for everybody. When your ‘why’ is big enough, you will find your ‘how.’ Sophia is why I do what I do. There is always hope out there. The journey is tough, but it brings families together. Wherever you find it, find your tribe. Find those who will stick with you.”
Burke was told that Sophia would not live to see her sixth birthday. Last year, she celebrated her Quinceañera, which is tradition in the Burke home that her mother wanted to do for her.
“When we saw how many odds she continued to defeat, we made that promise that we would do this for her. She loved it. There were things we had to modify, but we made it work. She lit up our town, not just our home. The police and fire department carried her into the hall and they all danced with her. I struggled that she wouldn't get her first dance, and they made that happen,” said Burke.
If there is anything Burke wishes, it is to encourage. Not only to encourage those with Rett Syndrome, but to encourage those around you to learn about the disorder and to teach it to others. Awareness spreads a message and inspires action. Change starts with a simple belief, and their belief is that Rett Syndrome can be the first reversible neurological disorder. They believe that girls are powerful and positive community leaders and mentors. Girls losing the ability to walk, speak, or use their hands for a lifetime are unacceptable, and they need the door unlocked for their growth and recovery.
For more information on Rett Syndrome and how you can help spread awareness, visit www.girlpower2cure.org.