Now in high school, Lauren continues to deal with the slow progression of CMT. Since the last walk, she has new leg braces which support her legs from the back and are one piece from the knee down. The new style is an improvement over the last braces she had, although she still continues to have balance issues. She continues to use a walker to get around school and we have been blessed with her transition to high school. Everyone has been so welcoming and encouraging and Lauren has made many friends already! We look forward to seeing everyone on the 12th!
To learn more about CMT, visit: http://www.cmtausa.org/
To learn more about Noonan Syndrome, visit: http://www.teamnoonan.org/
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Lauren is a spirited 12-year-old girl who loves going to school, being with family and friends, baking cupcakes (or any other sweet treat) and hanging out at the beach in the summer! While much of her life is typical of a 7th grader, one thing that makes Lauren unique is the fact that she’s living with two genetic conditions – Noonan Syndrome and Charcot-Marie-Tooth (CMT). Lauren was diagnosed in July 2015 with CMT (Type 1A), a condition which progressively deteriorates the insulation around her nerve endings and will eventually eliminate her sense of touch. It is also causing her tendons to tighten, deforming her feet. In addition to CMT, at the age of 7, Lauren was diagnosed with Noonan Syndrome, another genetic condition which results in short stature and low muscle tone. The combination of these two genetic conditions is very rare; in fact, Lauren is believed to be the only person in the world living with both.
These complex conditions require extensive care from medical specialists. This past year, Lauren bravely underwent surgeries on both of her feet to move tendons and muscle, and the results to date have been encouraging! Orthotics, leg braces and physical therapy will be required to assist her with walking, and Lauren will likely face more medical procedures throughout her life.
Family and friends are organizing this walk to raise awareness of Charcot-Marie-Tooth, as well as funds for Lauren’s future medical expenses. We hope you can join us in supporting Lauren in May!!