Eliza Schleifstein lives with her husband Todd and daughters Darcy, 10, and Emily, 6, in Randolph, New Jersey. Still practicing public relations after all these years, but now as a freelancer, she works with advocacy groups and pharmaceutical clients to help raise awareness for disease categories and new treatments, but only when she is not playing chauffeur. Eliza has been writing letters to her children for them to read when they are older since Darcy was born in 2002. For more information about Charcot-Marie-Tooth Disease, please go to www.charcot-marie-tooth.org.
Dear Darcy and Emily,
I knew from the very beginning that while both of you looked on the outside like every other child; there was something different about both of you. While neither Daddy nor I is the most athletic of people, you walked late and could never run as fast as the other kids. Your hand-writing and scissor use was at a lower level than that of your classmates and were a topic of conversation from your first parent-teacher conferences in nursery school at age 2. Darcy’s toe-walking, as if she was always wearing six-inch stiletto heels, and Emily’s hip dysplasia were also big giveaways that something was different.
The fact that you had these oddly shaped feet — known among the family as “the foot” — and walking issues were unsurprising, as all of your cousins had the same features. We were told by the family that everyone had the same characteristics and they would resolve themselves. What was the big surprise to Daddy and me was that it was a genetic disorder and degenerative. Charcot-Marie-Tooth Disease (CMT) is an inherited disorder of nerves, or neuropathy, that takes different forms. Incurable, this disease is one of the most common inherited neurological disorders. CMT patients slowly lose normal use of their extremities at different degrees of severity, as the nerves degenerate and the muscles weaken because the myelin deteriorates and the muscles no longer receive signals. Though CMT has no effect on cognitive or organ function, it is one of the diseases covered by the Muscular Dystrophy Association.
As you both were told, nobody in the family talked about CMT, even though several members knew about it. It was a huge surprise to us to find out that they did know about it when we walked into a Passover Seder hours after seeing Dr. David Roye, Director, Pediatric Orthopaedic Surgery, at Morgan Stanley Children’s Hospital and who we now refer to as the miracle worker, and told everyone what we had learned. Some families whisper “cancer.” Our family whispered “CMT.”
P.S. – See part 2 tomorrow.