by Kimberly Davis-Guerra
photos by Quy Tran Photography
Above photo: Caroline with her grandfather, Dr. Fletcher
If you or anyone you know might suffer from CMT, Dr. Fletcher wants to hear from you personally. You can email Dr. Fletcher directly at firstname.lastname@example.org. You can also contact Keri Henry, Caroline’s aunt and the director of Curing Caroline, at email@example.com.
Donations can be made at www.cmtausa.org/cure-caroline
Houston Family Magazine’s mission is to empower families to lead their best lives in this wonderful city of ours. As a part of my job, I like to get out in the community, meet new people, and hear their stories—it helps me understand what parents need, what they care about, and what obstacles real families are facing in our city today. When I met Keri Henry and she spoke about raising awareness about her niece Caroline’s rare illness, I immediately knew that this was the kind of story that other families in our community needed to hear—not just to raise awareness about the disease itself and the potential implications that Caroline’s treatment may have for countless other patients, but because of the inspiring way Caroline’s family has banded together in pursuit of her treatment, and the remarkable circumstances that led to her being diagnosed and treated for an illness that is still a mystery to so many.
Caroline has Charcot-Marie-Tooth (CMT) disease. According to the Mayo Clinic, CMT is a group of inherited disorders that cause nerve damage. This damage shows itself mostly in the arms and legs, or the peripheral nerves of the body, and eventually leads to muscle atrophy all over the body. In Caroline’s case, the first affected were her respiratory muscles, making everyday breathing tough and the common cold potentially fatal.
Caroline first began to show symptoms when she was only nine months old. Although specialists were initially unable to pinpoint exactly what was wrong with her, she had one advantage other children in her situation almost never do: her grandfather happens to be a well-known pediatric neurosurgeon.
Caroline’s grandfather, Dr. Stephen Fletcher, has been practicing medicine since 1979. He started his neurosurgical career at Hermann Hospital, where he has remained since 1985. He was acting Chief of Neurosurgery at Hermann Hospital in the late 80s, Chief of Surgery at Kingwood Medical Center from 1992 to 2001, and Chief of Pediatric Neurosurgery at UT Children’s Memorial from 2003 until 2011. Dr. Fletcher’s research interests have included congenital facial and skull anomalies in children, brain tumors in dogs, and in utero surgery for fetuses with spina bifida defects. He now has a new focus: peripheral nerve disease caused by genetic mutation.
At this point in time, Caroline’s disease is incurable. However, over the past seven years, considerable progress has been made. Dr. Fletcher and a team of scientists, geneticists, and doctors have helped develop a therapy for Caroline with potential implications for the treatment of over 2.8 million other patients. To simplify an explanation of an extremely complex process, the research team has discovered a way to attach a piece of a “good gene” to a virus that eventually goes to every cell in the body, blocking the “bad gene” from expressing itself. This type of personalized gene therapy has incredible implications for the future of medicine—especially for the millions of patients like Caroline who have an inherited form of a rare disease, like muscular dystrophy or ALS.
The Fletcher family is in a race against time to find the remaining $2.6 million for funding the treatment that could reverse Caroline’s rare disease—and, if successful, be applied to millions of other patients. Once Caroline gets this treatment, Dr. Fletcher already has a team in place to begin to restore the use of muscles that have been inactive for seven years. Like the program Fletcher’s team has developed for personalized gene therapy, this new treatment for muscular regeneration has the potential to be revolutionary, not just for Caroline, but for countless other patients suffering from ailments ranging from degenerative muscular illnesses to spinal injuries, restoring muscles that would otherwise have remained unusable and allowing them to regain mobility that otherwise might be lost forever.
It’s hard not to be overwhelmed thinking about medical innovations that could change the lives of so many people—millions who are suffering now, and countless others who may never have to suffer the way Caroline and her family have suffered. In some ways, the idea of an experimental, theoretical cure remains just that—theoretical and difficult to fully absorb, especially for those of us who aren’t research scientists. What is very apparent and easy for anyone to understand, though, is the love Caroline’s family, especially her grandfather, has for her. After working all day at the hospital, Dr. Fletcher can most often be found working with Caroline in the pool or sleeping by her bedside—whatever support she needs. To him, it’s simple:
“Caroline is tough, lovable, and anyone would do the same for their loved one. It only seems natural to devote this energy. …She rarely complains, and her twisted body is for others to see. She sees herself as complete and the real deal. She is competitive, appreciative, and outshines all.”
For parents of children with special needs, daily life can be overwhelming. Support and compassion from knowledgeable communities is essential. For families dealing with problems similar to those Caroline and the Fletchers have faced, Dr. Fletcher recommends the American Brain Tumor Association, Hydrocephalus Association, and The Charcot Marie Association of America.
Personally, I have found that getting to know the Fletcher family has made me reflect on the way children with special needs are often perceived by outsiders, compared to the very different way their loved ones see them. While out and about, I have seen many parents look away when they encounter children with special needs. However, their own children are often curious, innocently asking what is “wrong” with the other child. If your child asks you these kinds of questions, I encourage you to take the opportunity to demonstrate kindness and empathy. Teach your children that these kids are the same inside as they are. They all want the same things: to be happy, to play, to be loved, and to be seen for their potential rather than their limitations.
You can look for more information on Caroline and her journey on social media @CuringCaroline. Looking for charitable contributions? Please consider donating to this local and personal cause that will not help just one, but many: www.cmtausa.org/cure-caroline.
As we begin a new year and a new decade, there’s no time like the present to prioritize your own and your family’s health. If you have suspicions that something is not quite right with your child and their development, speak up and seek out medical professionals, support groups, and organizations that might be able to help. According to Dr. Fletcher, you can never “annoy” your doctor when it comes to getting to the root of your child’s health concerns—it’s their job to support you.
Stay tuned to Houston Family Magazine to watch Caroline as an HFM Kid Ambassador—we look forward to helping her explore all that our wonderful city has to offer in 2020!