Three generations of the Sharen Lepley family have a strong connection to The Children’s League. Sharen, her son Cody and grandson Bentley have all been helped by the League and treated for the same inherited disorder known as Charot Marie Tooth (CMT). Charcot Marie-Tooth disease is a group of inherited disorders that cause nerve damage. This damage is mostly in the arms and legs. Charcot-Marie-Tooth is also called hereditary motor and sensory neuropathy. CMT disease results in smaller, weaker muscles. It also can cause loss of sensation, muscle contractions, and difficulty walking. Foot deformities such as hammertoes and high arches are also common. Symptoms usually begin in the feet and legs, but may eventually affect the hands and arms. Symptoms of Charcot-Marie-Tooth disease typically appear in adolescence or early adulthood, but may also develop in midlife.
Sharen Davis Lepley was born in 1964 and at that time her family was not aware that she carried the inherited gene for Charcot Marie Tooth Syndrome. Sharen’s mother, Theresa Davis, was secretary for Mr. George Schwarzenbach, a local businessman and a League Board of Director. He encouraged Mrs. Davis to take Sharen to the League to see Dr. Kirby von Kessler a new pediatric orthopedist that saw children at the League. At just 2 years old Sharen had her first orthopedic visit with Dr. von Kessler for marked pronation of both feet and tight heelcords. She continued with routine visits in League clinics and was eventually diagnosed with having Charcot Marie Tooth, a disease that already affected several members of her family. Sharen had her first of many foot surgeries at age 14 at Children’s Hospital in Baltimore. She began brace wear and physical therapy to treat her CMT. Once she reached age 21 and aged out of League services Sharen continued necessary visits and surgeries with the good physicians that cared for her as a child. CMT affected her feet and toes as a youngster and as an adult Sharen has experienced the effect of CMT in her hands and fingers as well. For the 19 years that Sharen was a patient at the Leauge Dr. Kirby von Kessler was the orthopedist that cared for her. Sharen states, “CMT has never stopped any member of my family and it is not about to now. With The Children’s League giving us the support we need we will be fine.” Sharen continues a personal contact with the League through being an active member of The Children’s League Alumni Association. The Alumni is a group of past patients and families that meet quarterly offering support to one another and to current League patients and families.
Aware of her family’s history of CMT she had great concern of the inherited disorder when her son Cody was born in 1990. With a careful watch from Mom and Cody’s pediatrician for any signs of CMT Cody was eventually referred to The Children’s League when he was 6 years old. Ironically Dr. Kirby von Kessler, Pediatric Orthopedic Surgeon who treated his mother for so many years was still holding orthopedic clinics at the League and saw Cody in November 1996 for heelcord tightness and pronated feet. He continued yearly visits at the League and in 2002 was declared to have the inherited Charcot Marie Tooth Syndrome. Cody was diagnosed with a scoliosis curve in 2005 and continued to be followed for that as well as the CMT. His CMT progressed which affected his feet and toes but he has not required any surgeries for either the CMT or the scoliosis. As an adult and knowing that CMT can progress even into adulthood Cody is checked routinely. He states, “With the League behind us we will give CMT a swift kick”.
Sharen and her son Cody share the same hereditary disorder of Charcot Marie Tooth Syndrome. So with the arrival of Cody’s son Bentley in 2012 the family was once again concerned and faced with the possibility of CMT affecting the third generation of their family. As with his grandmother and his father Bentley also became a patient of The Children’s League. Cody knowing the effects of CMT that his mother lived with wanted his son to be evaluated in an orthopedic clinic at the League. In 2014 Dr. John Tis, Pediatric Orthopedic Surgeon, Johns Hopkins Hospital evaluated 2 ½ year old Bentley for turning in of his feet and an unusual gait. Because of the long-standing family history of Charcot Marie Tooth Syndrome Dr. Tis recommended that Bentley have genetic testing to declare the positivity of him having CMT. It was also recommended that Bentley wear a foot ankle orthotic or a well fitting high top shoe to give support to the ankle and foot. Bentley completed Genetics Testing in October 2015 and it was declared that he does carry the inherited disorder of Charcot Marie Tooth Syndrome. Bentley continues his routine clinic visits with Dr. John Tis and also receives weekly physical therapy at The Children’s League. Dad, Grandmother, Jenny Vought, his physical therapist and Dr. John Tis are all keeping a close watch on this young man for any signs of the CMT progression and hoping that Bentley will not need any surgeries until he is a teenager.
Cathy Growden, Executive Director of The Children’s League says, “Helping three generations of a family, getting to know each one personally, and observing the compassionate medical care given by the League pediatric orthopedists and therapists is what I have come to appreciate and love so much about The Children’s League. The League’s commitment of caring for and serving children for 83 years is truly remarkable”.
The Children’s League serves children birth to 21 from Maryland, West Virginia and Pennsylvania providing free orthopedic, cerebral palsy and cleft lip / palate clinics as well as free speech evaluations/therapy and physical therapy. To have a child scheduled or for information about the League or the Alumni Association please call the League office 301-759-5200.
