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!!
To learn more about CMT, visit: http://www.cmtausa.org/
To learn more about Noonan Syndrome, visit: http://www.teamnoonan.org/