Marissa is no stranger to adversity. Friedreich’s Ataxia (FA) is a disease that respects no rules and is continually presenting new challenges. Marissa amazes those around her with the resilience, grace, and determination with which she meets these obstacles.
Although Marissa always had some sense of being different from her peers, Friedreich’s Ataxia came into her life like a storm. One day she was a normal 12 year old girl with a bad cold and the next she was in the hospital unable to walk. Suddenly there were wheelchairs and neurologists; cardiologists and echocardiograms; travels to Iowa to consult with specialists and participate in research. Within a year of her diagnosis Marissa was already undergoing spinal fusion surgery. And yet, even as her world was turned upside down and inside out and spinning out of control, Marissa captured the heart of any she encountered. Nurses, doctors, therapists, staff at Ronald McDonald house…she drew and continues to draw them all in with her sweetness (and just enough sassiness), kindness, humility, and genuine love and appreciation for those around her. It truly is amazing that a child can go through so much and still see so much good in others.
Of course, the nature of a neurodegenerative disease is that it continues to take from a person. Most recently, FA has taken Marissa’s most cherished past time: reading. Following a winter of respiratory infections, Marissa found that her eyes just would not focus any longer when she was trying to read. We hoped this would improve with time, but 6 months later, we’ve found she is still unable to pick up a book and read without feeling dizzy and sick. After consulting with Marissa’s neurologist we have learned she has developed oculomotor apraxia. Her eyes can no longer coordinate the quick movements necessary to read small text. This has been an absolute heartbreak for her and for I as her mother. Harder than the the wheelchair; harder than the speech declines. This has been heartbreak. Telling Marissa that holding paper books and reading was no longer going to be part of her life was the hardest thing I’ve ever had to do.
Thankfully, we live in a time where technology exists that can help us. Dr LePichon, Marissa’s neurologist, has suggested we get her the largest iPad we can so that she can download books and blow the text up as large as she needs. On a large iPad, this means far less page swiping than on a Kindle or smaller iPad. We have tested the larger print out on a Kindle we have at home and the larger print does help. She finds she can read if the print is rather large, but is greatly frustrated by how often she must turn pages. An iPad would help greatly. In addition, because we homeschool, an iPad will allow us improved access to educational material for Marissa in larger print.
There are so many things I love about Marissa. Choosing a favorite quality is so difficult! I’ve mentioned how deeply I admire her love and kindness, her ability to see the good in others. I also must point out her joy in the pursuit of knowledge. Marissa loves to learn. She loves the process of learning. When her interest is sparked by something, she wants to know everything about it and she does not stop until she has exhausted the topic.
Her excitement is contagious and in her enthusiasm, she is eager to share her newfound passion with everyone she encounters. This is one of our favorite activities together. We are the self professed nerds of the family, although our areas of nerdiness are not always the same. Marissa loves to travel and has always been fascinated by other cultures. She has a long held dream of modeling and loves to be photographed. Her interests are vast and varied. She loves fashion, wants to run a German Shepard rescue center, and also dreams of being an epidemiologist.
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