Curing Caroline: A Family’s Fight against a Rare Disease

Caroline Fletcher, who attends West University Elementary School, has big brown eyes and an infectious personality. Her soft brunette curls complement her warm smile. The kindergartener has a friend and fan base the size of Texas. She’s currently in an inspiring fight against Charcot–Marie–Tooth, a rare disease of the peripheral nerves that controls muscles. Rare Disease Day is today (Feb. 28), a day to raise awareness for those living with rare diseases like Caroline.

CMT, named after the three doctors who discovered it in the late 19th century, affects nearly 2.8 million people nationwide, according to the Charcot-Marie-Tooth Association. The disease causes progressive loss of muscle tissue and touch sensation throughout the body. Caroline’s case is exceptionally severe.

Caroline Fletcher, (pictured, center, with her family at Laity Lodge in Kerrville) who suffers from a rare disease called Charcot-Marie-Tooth disease, does not let her limitations stop her. 

Her symptoms started showing up when she was around nine months old. Her twin brother, Henry, was rolling over and moving around, but Caroline was struggling. Her family started to notice. Soon, she was unable to grip onto objects and her muscle function continued to slow. She saw specialists but no one could provide answers. Eventually, doctors discovered that Caroline had a single genetic mutation. She was diagnosed with CMT.

Caroline’s grandfather, Dr. Stephen Fletcher, a beloved Houston pediatric neurosurgeon, has also been a leader in her fight. His determination to find help for Caroline after the family realized there were not a lot of medical treatment options available for the rare disease has helped drive their cause forward. It sparked a collaboration between scientists at The Jackson Laboratory and doctors at Nationwide Children’s Hospital who have joined forces to continue to look for a cure. 

West University Elementary School student Caroline Fletcher (pictured, with cousin Shelby Henry and twin brother Henry) does not let her rare disease get her down.

Caroline is wheelchair bound but her limitations do not limit her positive attitude. “Caroline inspires all of us every day,” said her aunt, Keri Henry, another one of her advocates. “She is so incredibly bright, self-aware, observant, and strong in so many ways. I have admired her strength and ability to mentally overcome so many challenges. I love advocating for her and we pray for her every single day. Her bravery will help so many people, I just know it. She and my dad make a great team of pioneers for the breakthroughs of gene therapy.” 

The symptoms for people who suffer from the disease vary, from difficulty with movement due to weakness in the muscles to chronic nerve pain and joint pain. Caroline’s severe case keeps her from walking or using her hands. She uses a ventilator at night because of weakness in her respiratory muscles.

Today, the team is continuing to search for answers through a unique gene therapy that could open the door to a cure. Awareness, funding, research and trials are giving hope to the CMT community, hope for Caroline and hope for all who suffer from the disease.\

Follow Caroline's journey on the Curing Caroline Facebook page.