Family Liaison Program
Liaisons in our growing Family Liaison Program are eager to share with you their experiences with CFC syndrome and to listen to your experiences too! All of the liaisons are a parent of a child with CFC Syndrome. They are also familiar with CFC International services and resources, which enables them to share a wealth of information with you. If you do not have a specific need to contact one of our Liaisons, then contact them to just say hello and to meet someone else affected by CFC syndrome in your area.
Breaux Bridge, Louisiana
Hello my name is Libby Airhart and I am from Breaux Bridge, Louisiana. I live with my husband Jason and three children. Ryker is eight, Jackson is seven and Amelie (BRAF) is two. Amelie was diagnosed at the age of 11 months by our geneticist who has also diagnosed two other patients with CFC. Our doctor knew right away what Amelie had because of her curly hair, "shiny pads of her toes and fingers", feeding issues and because she is very tiny. Amelie has come a very long way from not sitting, with no head control, to using a gait trainer for walking. Amelie was also diagnosed with heteroplasmy mitochondrial disease which is very rare. Amelie is a G-tube feeder due to her poor metabolism. Amelie participates in many therapy sessions a week along with Early Intervention through our state. Amelie is our pride, she brings so much joy to our lives. I am a very open book if you need to reach out and I look forward to continue on this journey of advocacy with our CFC families.
Castle Rock, Colorado
In 2010, my husband Chad and I were blessed with our sweet Hailey. She was our first child and we never saw any of the differences the doctors saw. After a few months of testing we were eventually led to the diagnosis of Cardio-Facio-Cutaneous Syndrome (MEK1) and we were connected to CFC International within hours. Hailey is now five and in kindergarten. She loves kids, music, fashion, shoes, accessories and books. Hailey is a very snuggly little girl and a sassy little thing. She uses sign language and an “i talk” to communicate. To get around, she has a walker and wheelchair. We are still g-tube dependent, have a few heart defects, keratosis, hip dysplasia and GI issues. We live in Colorado with Hailey, our son Landon, and our black lab Kota.
Hi! I’m Sara Greene and currently reside in a little town called Gray, in East Tennessee. In January 2013, my husband and I welcomed our son Lucas into the world and introduced him to his big sister, Olivia. Lucas was diagnosed with CFC at four months old with the BRAF mutation. Our life since then has been a roller coaster of specialists, tests, therapies and procedures. CFC International has been such an amazing tool and support group for us during this journey. The kiddos and parents we’ve met in person and online are so wonderful. I honestly don’t know what we would do without their support! The information other families can provide is invaluable and has even helped our doctors more effectively manage his condition. I’m happy to listen, answer any questions and help out in any way I can!
I’m Glenda Hux, mother to Lillian Gracie and wife to Kevin. I am an Occupational Therapist with 15 years of work experience in outpatient clinics, skilled nursing facilities and home health settings including management roles. Lillian was diagnosed with CFC at two years old. Even with my experience in the healthcare field, I didn’t meet anyone with CFC until Lillian was 11 years old and we traveled to a CFC conference. The journey felt lonely and unique at times. We found the task of finding adequate providers arduous. As a family liaison, I hope to bridge the geographic gap CFC families encounter through the magic of technology. As an occupational therapy practitioner, I hope to share my knowledge and personal experience of self-advocacy with other families in order to help direct them to appropriate and quality services.
Vestal, New York
Hi, my name is Tina Lilly, and I live in Vestal, NY with my husband Brent and our three boys. Michael is nine, Ben is seven, and Owen is three. Owen was diagnosed with CFC Syndrome (BRAF mutation) when he was 18 months old, although we knew something was different even while I was pregnant. Owen's health issues have thankfully been fairly mild. He does have a heart murmur, reflux, skin issues, and sleep apnea, to name a few. We were so thrilled when he started walking around age two, and at age three he never sits down! He is non-verbal but has learned some sign language to help tell us what he needs and he is working hard in speech therapy. Early Intervention was a huge help in setting us up with all the therapy he required from an early age. Owen is now in preschool and really enjoys being around people. He loves tractors, music, being outdoors, and being the center of attention. Owen has a smile for just about everyone he meets. CFC International has played a huge part in helping us connect with other families and manage Owen's treatment. I look forward to helping others do the same!
Blenheim, New Zealand
Hi everyone, my family and I are from New Zealand. We live in a beautiful beachside town about a 45 minute drive north of the capital city Wellington. I was born in the UK but have lived in NZ since I was 14. My husband Kere is a fire fighter and we have a rather handsome nine year old son Blake. Our beautiful daughter, Jenna-Faith, who is nearly seven, was diagnosed with CFC Map2K1 when she was four and a half, after a long and stressful search for answers. She had originally been diagnosed with Noonan Syndrome. My instincts told me that this wasn’t right, so I carried on searching for the answers we needed.
Being in New Zealand, we always felt a little isolated. However, in 2015 after two years of fund raising, we attended the Seattle conference. We discovered this amazing family we never knew we had. Every single one of them understood our lives with our little girl. It was an incredible feeling.
We know that the opportunity to travel to these events is not one that all families are lucky enough to be able to do. It is important for you all to know that you are not alone. You all have an amazing family to support you every step of the way as we face the challenges, successes and the impact our CFC children have on the family unit. I am happy to help you in anyway that I can.
Hi my name is Brooke Troy and I live in Narellan Vale, Sydney, NSW, Australia. I am happily married to Wayne. We have three beautiful children, Brenden, Tarryn and Cody, who has CFC Syndrome. Cody was diagnosed genetically with CFC at three years of age. The first three years, not knowing Cody’s condition, was very hard. We were in and out of the hospital and he was on a wide range of medicines. Then, on his third birthday the jigsaw puzzle all came together. We received that phone call to say the genetic testing confirmed Cody had CFC. Cody has suffered from several seizures and is now on medication to keep them under control. He started walking at the age of five and now we cannot stop him. He has been tube fed since the age of three months, due to oral aversion and we think laziness on his behalf! Cody is non-verbal, so he uses objects and picture cards as his way of communication. He attends Beverley Park Special Needs School in Campbelltown and is very much a routine child. Cody loves to be around people, give cuddles and best of all he can say G’Day when he sees someone. With my experiences with Cody, I am more than willing to help and answers questions when needed. Please don’t hesitate to contact me.
Richmond, North Yorkshire, England
Hello, my name is Sam Weston and I live in Richmond, North Yorkshire, England. I am married to Gary with three gorgeous children. Our lives changed dramatically with the arrival of our second child who has CFC. After a couple of turbulent years spent in and out of hospital, Marcus is now progressing really well and attending mainstream school. Living in a small market town means that Marcus is a well-known character in our local community; particularly in the local cafes eating cake!
I work in our local secondary school (11-18 year olds) as an English and Media Studies teacher. I hold the role of Lead Learning Manager for KS4, working closely with 14-16 year olds, helping them all to achieve their academic potential across all of their subject areas. My daily working life is varied and stimulating. I find my experiences as a 'special needs parent' have definitely helped my career and empowered me in many ways. However, I realize that working is just not an option for many special needs parents. It wasn't possible for me to work for a few years and I never take my career for granted. Gary and I now manage to share the parenting responsibilities, housework, hospital appointments and sick days. For us, teamwork and communication are crucial to keeping our family on track.
Life is rarely dull in the Weston household with two lively and sociable daughters who love gymnastics, and one fun loving son who enjoys his gadgets and games. We like to travel and introduce the children to new and exciting experiences. We look forward to meeting you all on one of our exciting adventures.