Alec’s Story of Hope


Alec and His Wildlife Adventures

Alec Farmer entered this world in Dayton, Ohio on January 22, 1996. He was a large baby, tipping the scales at 10 lbs 9 oz, so a c-section delivery was required. His large size came as a huge surprise as we were told to expect a 7-8 lb baby just a few days earlier. Alec received the complete post delivery exam and did not show any obvious indicators that there was anything wrong. Other than a short stint of colic during his first year, he was a good baby and progressed according to schedule. Our first indicators of any issues started revealing themselves as he entered his second year of life. We started recognizing delays in speech, gross and fine motor functions, but doctors kept telling us not to read so much and we were suffering from first time parent syndrome. At ages three and four we could no longer accept their responses and pursued a diagnosis from an extended group of medical professionals in the Dayton area.

Alec also began receiving educational assistance by attending a local county-based early intervention program. His half days there worked to address each delay area such as speech, fine and gross motor development. After failing to make any progress with obtaining a diagnosis locally, we moved our efforts further south about an hour away to the Cincinnati Children’s Hospital. Alec’s case was accepted quickly into their Cincinnati Center for Developmental Disorders with a team of highly noted physicians and medical practitioners assigned to research his specific characteristics. After several examinations and a great deal of analysis, we were told that they were confident that Alec had CFC as well as a condition called apraxia which was the primary issue with the communication and motor skills delay. With CFC being a rarely diagnosed condition, they didn’t have a great deal of information to share other than the high percentage of heart related conditions. They immediately scheduled a full cardiac exam which revealed no heart abnormalities and for that information we were very thankful!

Now our quest for knowledge on this newly found syndrome began and that is how we found the CFC family. We attended conferences in Maryland and Florida over the next several years and made friends with so many nice people with a CFC connection. It was both a rewarding and emotional experience making friends with other families and medical practitioners with a common CFC link. We shared applause for those who accomplished life goals and tears with those families who experienced the loss of life. Alec served as a DNA donor for the critical genetic research process which both scientifically confirmed his CFC diagnosis as well as the development of a genetic testing mechanism.

Alec is now an 18 year old SENIOR in high school and will graduate in May, 2015. He has attended the same public school district the whole time and has developed a large support group of friends who have supported him at every stage of his life. Alec’s educational experience has been a combination of working in a special education classroom as well as mainstream integration (art, music, gym, etc.). His academic day has vocational aspects with Alec serving as the schools recycling coordinator, food service inventory control assistance and assembling kids coloring packets for a local restaurant. Alec has worked each of the past summers at a local workshop and will begin his vocational work career full time upon graduation. His gross and fine motor skills have improved dramatically to the point where he no longer receives therapy in that area. The affects of apraxia continue to be challenging with his recognizable speech development which has progressed slowly thru traditional therapy, so he now uses an IPad with speech software to augment communication efforts.

Alec is a very social person and well known for his friendly disposition in school and throughout the community. He has matured from a cute little boy into a handsome young man. Outdoor activities are his favorite irrespective of the weather. Warmer months equate to bike riding, camping, fishing, motorcycle rides and boating on Lake Erie. Colder months offer hunting, snow related fun, football and family holiday activities. A few of Alec’s most notable milestones have been learning to ride a horse at age seven, harvesting a 700+ pound elk with a rifle at age 13 and learning to swim at age 15. He loves to travel with trips spanning from one coast to the other and from Canada to Florida. Graduation in May will mark a great accomplishment and recognize his perseverance in completing a life goal, but Alec’s future still holds so much more growth opportunity and experiences with more greatness to come!

Over the past years there have been many CFC family stories shared thru this venue with each one highlighting both common aspects we share as well as the uniqueness of our own daily lives. Each account has chronicled the many challenges that face both the individual with CFC as well as their loved ones who support them thru their journey. As parents, grandparents, siblings, extended family members or just great friends, we all have one thing in common…a CFC angel in our lives that has forever made us better, kinder, patient, loving and humble people. It is their enduring efforts to overcome the trials presented to them daily that reinforce our existence and role as a support system. If there is one thing you take away from this information regarding Alec’s life as a person with CFC, it is that he has lived it to the fullest and has been able to have many wonderful experiences over the past 18 years. Have there been struggles and challenges…absolutely! Does any “typical” child growing up in this world experience some of the same struggles and challenges…absolutely! Feel blessed with the person God has given you to call your own, help them to live their life to its absolute fullest and your reward will always be the fact knowing that you did.

Doug Farmer Circleville, Ohio