From Wikipedia:
Cleft lip and cleft palate, also known as orofacial cleft, is a group of conditions that includes cleft lip (CL), cleft palate (CP), and both together (CLP). A cleft lip contains an opening in the upper lip that may extend into the nose. The opening may be on one side, both sides, or in the middle. A cleft palate is when the roof of the mouth contains an opening into the nose. These disorders can result in feeding problems, speech problems, hearing problems, and frequent ear infections. Less than half the time the condition is associated with other disorders.
Cleft lip and palate affect 1 in every 700 births each year.
Cleft lip and cleft palate, also known as orofacial cleft, is a group of conditions that includes cleft lip (CL), cleft palate (CP), and both together (CLP). A cleft lip contains an opening in the upper lip that may extend into the nose. The opening may be on one side, both sides, or in the middle. A cleft palate is when the roof of the mouth contains an opening into the nose. These disorders can result in feeding problems, speech problems, hearing problems, and frequent ear infections. Less than half the time the condition is associated with other disorders.
Cleft lip and palate affect 1 in every 700 births each year.
CLEFT ACTIVISM
2018 GERBER SPOKESBABY SEARCH
In 2018, I entered Delilah in the Gerber Spokesbaby search. We didn’t win, but we didn’t enter to win. We entered to have cleft representation.
2018 HALLOWEEN
Our first Halloween as parents we made sure our Jack-o-lantern had a bilateral cleft, just like our daughter.
PARENTS & CLEFTS by AMY MENDILLO
2019 BELK FASHION SHOW
In 2019, Delilah participated in the Belk Fashion Show. Again, our participation was so that cleft issues were represented among the models.
PRETTY BABY COUNTY FAIR CONTEST
ACPA DEVELOPMENT COMMITTEE 2021
January 1st, 2021, I started a 2-year position on the Development Committee of the American Cleft-Palate-Craniofacial Association (ACPA). I realized, however, that I was not a good fit for the organization, and I resigned in July 2021.
ACPA RESIGNATION STATEMENT
I know it’s been important to you guys to follow Delilah’s journey, as well as that of our family, in bringing cleft awareness to the mainstream. It’s important to me—and to our family—that people understand that cleft lip and palate is the most common birth defect in the world, and affects each and every family differently. It’s also important to us that everyone understands that kids affected by cleft are just like any other kid. They just look a bit differently at first. Our family is committed to being advocates for cleft-affected families all across the world. Since 2018, here are a few things we’ve done as a family to bring better understanding and awareness to cleft:
-Our first Halloween our Jack-o-Lantern featured a bilateral cleft just like Delilah’s.
-Gerber Baby Foods, in late 2018, announced a search for their next “spokesbaby”. I submitted Delilah as a candidate.
-The Belk Fashion Show; we entered Rue in the annual spring fashion show at the Belk department store to include cleft representation amongst a sea of kids without orofacial issues.
-Last year, August of 2020, I published For Delilah: An Unexpected Journey, which is a memoir of my life up through the birth of our daughter, Delilah, and learning she was cleft affected. Thanks to anyone and everyone who has bought a copy by the way!
-This year, January 2021, I started a 2-year assignment on the development committee of the American Cleft Palate-Craniofacial Association (ACPA). Since starting on the committee, I’ve been so very thankful for the opportunity given to me, and to the many wonderful members of the ACPA who have all championed cleft awareness and prevention. I am honored to have been included in the Association and to have even been considered in the first place!
But there’s one thing I’ve always maintained, and that is that if I’m going to do something, I’m going to do it full-hearted, and not half-assed. I’ve always maintained that with my marriage, my writing, my film projects, and my various other endeavors.
As of right now, I am not able to provide the time and attention that everything needs, and the one aspect that is suffering is my participation within the ACPA.
From the moment my daughter was born cleft-affected, awareness for the condition has always been of utmost importance to me, and I cannot continue to sit on the bench while simultaneously being the weakest player on the ACPA development committee team. When one teammate is not giving their all, the team is not it’s strongest. I want the very best for the ACPA and for the committee members and their families, and for the ACPA to be the very best that it can be.
So, after much consideration with Tiffanie, I’ve made the decision to step down from my position within the ACPA, so that the team can continue to be their very best at championing the conditions that are nearest and dearest to us, without having to compensate for a player who isn’t bringing their all to the plate. I’ll always be an advocate for cleft awareness, and as I outlined earlier, I haven’t ever needed an “official” position to do so.
I’ll continue to fight for cleft awareness and to be a friend for those parents who are scared, or unsure of what to expect with their child that is going to look a little bit differently than they had envisioned. I’ll continue to be that for the cleft community, but will be doing so outside of the ACPA as I always had been before. Best wishes to everyone on the development committee, the ACPA, and my sincerest thanks for allowing me the opportunity to be a part of something greater. Cleft strong.
-Our first Halloween our Jack-o-Lantern featured a bilateral cleft just like Delilah’s.
-Gerber Baby Foods, in late 2018, announced a search for their next “spokesbaby”. I submitted Delilah as a candidate.
-The Belk Fashion Show; we entered Rue in the annual spring fashion show at the Belk department store to include cleft representation amongst a sea of kids without orofacial issues.
-Last year, August of 2020, I published For Delilah: An Unexpected Journey, which is a memoir of my life up through the birth of our daughter, Delilah, and learning she was cleft affected. Thanks to anyone and everyone who has bought a copy by the way!
-This year, January 2021, I started a 2-year assignment on the development committee of the American Cleft Palate-Craniofacial Association (ACPA). Since starting on the committee, I’ve been so very thankful for the opportunity given to me, and to the many wonderful members of the ACPA who have all championed cleft awareness and prevention. I am honored to have been included in the Association and to have even been considered in the first place!
But there’s one thing I’ve always maintained, and that is that if I’m going to do something, I’m going to do it full-hearted, and not half-assed. I’ve always maintained that with my marriage, my writing, my film projects, and my various other endeavors.
As of right now, I am not able to provide the time and attention that everything needs, and the one aspect that is suffering is my participation within the ACPA.
From the moment my daughter was born cleft-affected, awareness for the condition has always been of utmost importance to me, and I cannot continue to sit on the bench while simultaneously being the weakest player on the ACPA development committee team. When one teammate is not giving their all, the team is not it’s strongest. I want the very best for the ACPA and for the committee members and their families, and for the ACPA to be the very best that it can be.
So, after much consideration with Tiffanie, I’ve made the decision to step down from my position within the ACPA, so that the team can continue to be their very best at championing the conditions that are nearest and dearest to us, without having to compensate for a player who isn’t bringing their all to the plate. I’ll always be an advocate for cleft awareness, and as I outlined earlier, I haven’t ever needed an “official” position to do so.
I’ll continue to fight for cleft awareness and to be a friend for those parents who are scared, or unsure of what to expect with their child that is going to look a little bit differently than they had envisioned. I’ll continue to be that for the cleft community, but will be doing so outside of the ACPA as I always had been before. Best wishes to everyone on the development committee, the ACPA, and my sincerest thanks for allowing me the opportunity to be a part of something greater. Cleft strong.
