Meet Our Families

I am Kristin and my daughter, Allyson, has Ectrodactyly-Ectodermal Dysplasia-Clefting Syndrome (EEC) and is three years old. Allyson’s congenital anomalies were unknown to us prior to her birth. You can imagine our shock when she was born with a bilateral cleft lip and palate and just two fingers on each hand and two toes on each foot. It felt as if my world had come crashing down… the dream of having a “perfect” baby with a button nose, rosebud mouth, and the proverbial “ten fingers/ten toes” vanished in an instant at in December, 2004. I remember crying, “Why? Why? Why? What’s going on? What happened?” to everyone in the delivery room. Between the emotional strain of labor and delivery and the shock of our newborn having multiple birth defects, my husband actually passed out in the delivery room and the spent the next three days in ICU with a traumatic brain injury. He has since recovered, but Allyson’s birth left an indelibly profound mark on our lives and changed it forever.

Allyson spent the next 12 hours with me where I cuddled with her and literally wrapped my arms around this child whom I knew would need more care and love and encouragement than was fathomable at the time. I wondered how I “would do it” and “how her life would be.” She was taken to the NICU in the afternoon because she wasn’t able to breastfeed and couldn’t successfully drink from a bottle. During her first hour in the NICU, a neonatologist began to research Allyson’s condition and brought me a copy of a page out of a medical encyclopedia with the words “Ectrodactyly-Ectodermal Dysplasia-Clefting syndrome” at the top. He said, “I don’t know anything about this syndrome, but I think this is what she has.” That piece of paper was her clinical diagnosis based on her various congenital anomalies. Other than “clefting”, these words seemed like a foreign language to me and the list of “problems” associated with the syndrome seemed potentially worse than a death sentence. Again, the voice in my head shouted, “How are you going to do this?” I spent the next week visiting Allyson in the NICU where she was gradually weaned off the NG-tube and learned to drink from a special bottle and was able to come home.

Being fortunate to live in this Internet-age, we found out about the NFED within days of Allyson’s birth by simply doing a search for “EEC Syndrome”. My sister, Ashli, first contacted the NFED on our behalf and we were sent a ton of information about ectodermal dysplasia syndromes… not only did WE receive packets of information, but my parents and my husband’s parents received pertinent information packets as well. Ectodermal dysplasia does not just affect the individual or the individual’s immediate family, it affects the extended family as well and we’re all responsible for Allyson’s health and well-being and making others aware of ectodermal dysplasia and how it affects our lives. My first communication with the NFED was via e-mail with Kelley. She welcomed our family into the NFED family and sent me a list of families in California (where we were living at the time) who had someone affected with ED as well as a list of families throughout the country who were affected with EEC Syndrome. I remember thinking how great would it be to meet some of these families one day and find out what they know and how their child’s life has been shaped by this syndrome. In the midst of all the uncertainty surrounding Allyson’s condition and how her life “would be”, we were comforted by knowing we were not alone. When we recently moved from California to Virginia, we relied upon the NFED and families living near our new home for references of doctors and treatment facilities which had been recommended by others affected with ectodermal dysplasia. The task of establishing new doctors (up to a dozen specialists in Allyson’s case) was quite overwhelming. The NFED and its families helped us narrow our choices and made the process much more manageable.

The NFED serves as the “rock” or home base when it comes to our daughter’s well being. While Allyson is affected with many special needs, most of them have been “fixed” through various surgeries. She’s had her cleft lip and palate repaired. She’s had her fused fingers separated and she’s had the clefts in her feet closed. But, she’ll always have ectodermal dysplasia. As of now, there is no “fix” for that. Being the only organization in the country dedicated to serving individuals with ectodermal dysplasia, the NFED will always be the foundation we’ll turn to for support, research, information, and stability in a world of day-to-day changes. We hope and we pray that when Allyson has children and when those children have children, the characteristics associated with ectodermal dysplasia will not only be treatable, but will be erasable and eradicated.

We attended our first National Family Conference in July 2006 when Allyson was 19 months old. It was such an emotional experience for me to finally meet families who were affected with EEC syndrome just like ours. When raising a child who looks “different” from the rest of the world, it is so comforting to see dozens of other kids who look just like your child and to meet other parents who have been down the same road you have walked. I remember meeting a five-year-old girl with EEC syndrome. I was blown away because it felt as if I was seeing the future and I could picture exactly how Allyson would look, sound, and act when she reached that age. I remember meeting a mother who was affected with EEC and was married with three kids (two of which had EEC). As a mother who wants the best for her little girl and dreams of seeing her married with children one day, it was reassuring to know that “dreams still come true” despite the challenges of having EEC Syndrome.

My biggest revelation occurred at the 25th Anniversary Gala which was held the night before the conference began. As I sat and listened to the speakers talk about how far the NFED had come since its inception and how many people had been helped through treatment assistance, research programs, scholarships, and family networking, I realized that we were now part of a new family and always would be. When Charlie Richter spoke about his mother’s hard work and mission over the past 25 five years, I saw another flash into the future… that my daughter, Allyson, would be speaking at the 50th Anniversary celebration and would be praising the NFED for being a part of her life – always.

I first met the Huxman family at the Family Conference in 2006. After the 25th Anniversary Gala, I had returned to the meeting room where childcare had been provided for Allyson and my older daughter, Morgan. When I walked into the room, I saw a “strange” man holding Allyson in his arms – it was Chris Huxman! DeAnn, his wife, was with him picking up their children and she pointed at Allyson and said to me, “it’s Rally for Ally!” (a reference to the annual NFED fundraiser that my sister organizes in honor of Allyson). Some parents would be taken aback, but because of the “family atmosphere” created by the NFED at these conferences, I trusted that Huxman family were “good people” and we introduced ourselves and began sharing our children’s stories. Their middle son, Tyler, is also affected with EEC, and is the same age as my oldest daughter, Morgan. For the remainder of the conference, we attended sessions together, ate meals together, went to the pool together, laughed together, shed tears together, and formed a lasting friendship in just three short days. Chris became so “smitten” with Allyson and she was constantly in his arms throughout various conference events. Chris and Allyson formed such a bond that many people thought that she was his daughter! (My husband was not able to attend the conference that year because he was preparing for a military deployment to the Middle East.) We were fortunate to visit them family again following the Family Conference in Los Angeles in 2007. After just two meetings, we were not only close friends, but family. When we moved from California to Virginia this past December, we routed ourselves through Kansas and spend the night at their home where they treated us just like family and we could have stayed up all night catching up and sharing stories with one another. Had it not been for our exceptional kids, Allyson and Tyler, we would have never met one another.

Allyson’s life has not been without challenges. She’s undergone seven surgeries and two other procedures under anesthesia. She’s had hundreds of doctor’s appointments and we’ve logged thousands of miles on our car getting her to her appointments with dozens of specialists. Allyson's diagnosis of EEC syndrome opened a door to a new way of life... and of living. This past year has been especially rewarding as we've seen Allyson grow and mature... she's now "talking up a storm" and "eating us out of house and home"! After an intensive feeding therapy program last summer, she was weaned off of her g-tube last fall and continues to eat well and thrive on her own. Allyson recently started preschool three days/week and loves the interaction with other children and exercising her independence by riding the school bus. Unfortunately, Allyson's vision has dramatically declined over the past year and she's now working with a teacher for the visually impaired as she is legally blind in both eyes. Her corneas are severely scarred from chronic dryness and inflammation. Although “dry eyes” is associated with ectodermal dysplasia, Allyson had few problems with tearing and dryness from birth to age two. Seemingly out of “nowhere” and despite our rigorous attempts to lubricate her eyes, she started experiencing problems a year ago and has lost most of her sight as a result. Through all of life's ups and downs, Allyson's tremendous spirit shines through in everything she does. She is confident, smart, and the joy of my life!

Much of what we do as a family still revolves around Allyson’s needs. Trips to the park are limited to cloudy and cool days because the bright sun is too strong for her eyes (even with sunglasses and a hat) and too warm for her skin. We eat dinner by candlelight most evenings because the overhead lights in our kitchen force Allyson to keep her head down while eating. Even my husband’s military assignments have to be tailored to areas of the country where there are adequate specialists to accommodate Allyson’s medical needs.

Talking about Allyson’s challenges and health issues is not easy for me. I want people in our lives to know “Allyson as Allyson" and I don't want her defined by this syndrome and the “medical stuff” she faces every day. But the truth is that ectodermal dysplasia and the challenges that accompany this condition will always be a part of her life. Because of the rarity of this disorder, I’ve been the educator for most of the doctors we’ve encountered over the past three years. And where did I receive my training and education about Allyson’s syndrome? From one place and one place only… the NFED.

I am so grateful that the NFED exists for all families who are affected by ectodermal dysplasia. Allyson is still very young and as her mother, I am able to take care of her daily needs, protect her from what may harm her, and encourage her to do her best in whatever she tries to do. But as she gets older, I won’t have all the answers to her questions nor will I be able to teach her everything she needs to know… like how to tie her shoes or button her shirt with just two fingers… or what to use on her hair to keep it from falling out when she wants to wear a ponytail like the other girls in school… or how to explain her differences to kids at school without them making fun of her… As kids grow up, the “real world” can be a scary place, but with the support and guidance of the NFED and the knowledge and love of the friends we’ve made, the idea of the “real world” for Allyson is not so scary anymore. Please consider supporting the NFED with your donation – for the hope that Allyson’s life “would be” just like we dreamed before she was born and just like the dream that every parent has for their own child.

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