Meet Our Families

"“He has endured many painful medical procedures and tolerates without complaint the many challenges that accompany EEC.” ". -Smith Family

On September 11, 1989, our third son, Timothy, was born. After a tough pregnancy, we were ecstatic to finally hold him in our arms. It was obvious immediately that Timothy would face many challenges. He was missing fingers and his hands were very different and boy, did he have some awesome feet! His feet were “split” down the center with two toes facing one way and the remaining two toes facing the other.

My husband, Tim, and I knew our new son was different physically than most newborns, but in our eyes, he was and still is just perfect. We stumbled through the medical processes at first, with very little help from our pediatrician at that time. When we found a geneticist at Children’s Hospital in Washington, D.C., Dr. Ken Rosenbaum, the mystery of Timothy’s health issues was solved, and we were able to start making informed decisions regarding his health and future. The first decision was to find a pediatrician who understood EEC (Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome), Timothy’s diagnosis. Dr. Steven Brown in Maryland and his associates became lifesavers for us, because it is so important that children with ED get referred to many specialists. Steve and his partners knew a network of other physicians familiar with Timothy’s diagnosis and they made sure he was referred to the best.

It took awhile for me as Timothy’s most important medical advocate to discern what specialist best met Timothy’s needs not only medically, but emotionally as well. We have recently relocated and were very fortunate to find Dr. Luis Gonzales in Merritt Island, Florida, who has other ED patients. He has been more than we could have hoped for in a physician and a medical support along with his associates at Atlantic Coast Pediatrics. I mention these doctors’ names in particular, because the journey to find compassionate and skilled doctors is often sidetracked with hit or miss efforts, and it is so important to utilize the physician’s reference materials from the NFED or access referrals from others such as I have provided.

Timothy’s most noticeable trait since he was born is his constant state of contentment and happiness. It did not matter what painful surgery or procedure he was enduring, he never complained and was always happy. To this date, at 17, he still remains consistently content, self-assured, with an extremely positive outlook on his abilities and life in general. He will be the first to extend his hand, which he has never attempted to conceal, shake your hand and smile.

We are thankful for the grace God has given Timothy. He has endured many painful medical procedures and tolerates without complaint the many challenges that accompany EEC. Tim has had his feet completely reconstructed. He has undergone surgery on his mouth, teeth and gums, multiple surgeries on his eyes, nasal cavities and ear. He was also treated for a brain infection at the National Institutes of Health in Bethesda for two years on and off which left him with some short term memory dysfunction. He also suffers from severe dermatology problems and his biggest hurdle at this time, the loss of most of his teeth.

Tim is in his senior year of high school. He is home schooling. He chose home schooling so that he can attend art classes as a dual enrolled student at the local community college, where he made the Dean’s list. He types all of his schoolwork and is faster on the computer keyboard (with missing digits and sydactyly) than any of us. He also is the starting varsity nose guard for a local high school’s football team, the Lions. This provides a challenge due to his body temperature issues, as we reside in Florida with temperatures on most practice days up to 100 degrees and the heat index well above that. The heat and football equipment have presented problems with increased susceptibility to skin infections but he has set his mind on succeeding at this sport. His coaches have been wonderful and encourage Tim’s drive and determination. He received the award this week for lineman of the week and defensive player of the week.

He rocks at Guitar Hero and loves to read and work on his truck. Timothy applied for and won a scholarship this summer to the Corcoran School of Art and Design in Washington, D.C. His dream is to attend college to study art and to do it with a beautiful new smile. Everyone that knows Tim agrees that if his smile could be as bright as his outlook on life, we will all need sunglasses!

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