Cleft Strong for Peter 2017 Virtual 5k
EVENT DATE: Jul 01, 2017
July is National Cleft & Craniofacial Awareness & Prevention Month (NCCCAPM). This July we're holding a "Cleft Strong For Peter Virtual 5k." Anytime in the month of July you can walk, use the treadmill, run outside, or participate in another race to complete your 5k (3.1 miles). You can run or walk your race at your pace wherever you like.
In lieu of a race fee, "register" for your Cleft Strong for Peter Virtual 5k at any time by donating to whichever cleft organization you choose. No amount is too small; a gift from the heart will go a long way. Click the orange "donate" button at the top of this page to donate to one or both of our favorite organizations:
- The Foundation for Faces of Children (founded by Peter's surgeon, Dr. John Mulliken) is a non-profit that provides patients and families with the most accurate, up-to-date, and accessible information about facial differences. FFC also advocates for the best care possible for children with facial differences (in an environment where there are no standards). No child should go through the risks/challenges/pain presented by surgery and recovery, and come out on the other side with a suboptimal result.
- Global Smile Foundation is an organization that leads mission trips in developing countries around the world to help patients with facial conditions (most of which are cleft lip and cleft palate). We like GSF because it is a mission-based organization with low overhead, a sustainable model for comprehensive long-term care, and because each member of the mission teams has cleft experience (from the nurses to the anesthesiologists), and only experienced cleft surgeons conduct actual repair surgeries. These nations often have little education and/or access to appropriate medical care for clefts, and infants/cihldren suffer malnutrition, abandonment, and/or social ostricism as a result.
Instead of a bib, we'll be mailing all donors an official race ribbon to wear when you run your 5k anytime in July. Please send us your address if you're not sure that we have it. Register/donate early so we can get you your ribbon(s) by July 1! We would love it if you would send us a picture of your run/with your ribbon for Peter's scrapbook (or tag #CleftStrongForPeter on social media)!
Peter is a miracle and an angel. Through our experiences during his first year of life, he has emboldened us and inspired us to try to make a difference in the lives of other children and families affected by cleft lip and cleft palate.
Note: If you prefer to donate by check, please make your check payable to "Foundation for Faces of Children" or "Global Smile Foundation" and mail it to us in Winchester; we'll forward it along to the organizations directly.
Peter was born in April 2016 with an extra wide smile to share with the world. His birth smile was exceedingly rare and exceedingly special - it was called bilateral macrostomia (~1/1,000,000- 1/1,500,000) That means he had a transverse lateral cleft on both sides of his mouth.
By the grace of God, Peter was able to eat orally since birth. Feeding wasn't without challenges (his clefts made bottles impossible), but with lots of lactation support, he was able to breastfeed. We were lucky; many cleft babies can't breastfeed at all. Some use specialty bottles, or some will have feeding (nasogastric or "NG") tubes from birth, until their clefts can be repaired. When access to specialty bottles or an NG tube is not available, mothers/caretakers resort to any possible solution to sustain their child through infancy. For many babies in the world, having a cleft (and the feeding challenges that come with it) can prove fatal.
By the grace of God again, Peter had access to the best macrostomia surgeon in the world (Dr. Mulliken at Boston Children's Hospital), and was supported through 9-hour surgery and a very challenging recovery by his absolutely vigilant medical team, lactation consultants, feeding specialists, God and his two parents who never left his side, his big brother who always lifts his spirits, and extended family and friends praying for us, cooking for us, and caring for us in ways more impactful than they'll ever know.
As cleft parents know, surgery is only the first major hurdle. Peter's recovery was very difficult, fraught with feeding challenges. Many cleft children require multiple surgeries into adolescence and young adulthood.
In the global scheme of cleft-affected children and families, our experience is not the norm. Not every parent has knowledge of/access to top medical care, even within this country, let alone in developing nations around the globe. There is an initiative in the U.S. and abroad now to regulate and set standards for the outcomes for cleft lip and palate repairs, but as of today, the range and quality of surgical repairs domestically and abroad is very wide.
Cleft lip and cleft palate are facial and oral malformations that occur very early in pregnancy (between weeks 4-10 of gestation). A cleft lip is a separation of the lip (usually affecting the upper lip), which can extend into the nasal cavity and include the bones of the upper jaw and/or upper gum. A cleft palate is one or two splits or openings in the roof of the mouth, which can affect the hard and/or soft palates. Because the lips and palate develop separately during pregnancy, it is possible for a baby to have a cleft lip, or cleft palate, or both.
Cleft lip (with or without an affected palate), is the 4th most common birth defect in the U.S., affecting one in 600 babies annually. The cause of clefting is unknown, though genes and environmental factors may play a part. Expectant mothers are often offered abortions once a cleft is detected on ultrasound, and many terminate their pregnancy for this reason, despite the facts that clefts are completely repairable and that there is nothing wrong with these babies--they are fearfully and wonderfully made.
In addition to feeding challenges, clefting can also cause issues with hearing, ear infections, speech, and teeth/oral development. Many children require several surgeries, into young adulthood. Although these children are born perfect just as they are (and, more to the point, their smiles do not define them), social stigmatization is another area of concern for parents, particularly in developing nations where education and treatment are not always available.
"The Lord sees not as man sees:
man looks at the outward appearance,
but the Lord looks at the heart.”
I Samuel 16:7