2nd Annual Apert Syndrome Picnic

By Cassie Johnson

"Ten little fingers and ten little toes” are words every new parent wants to hear. Unfortunately for some parents, their child may have a birth defect. Many birth defects are so rare that most people are unaware of them, including Apert Syndrome, Pffiefer Syndrome, and Cleft Lip/ Cleft Pallet. There are events for more common conditions like cancer or diabetes, but not craniofacial disorders. September is Craniofacial Acceptance Month, and we would like to introduce you to one little girl in our community who is living her best life.

Braeleigh Jeters just turned nine years old and was born with Apert Syndrome. This very rare birth disorder causes the bones in an infant’s head, face, hands, and feet to abnormally fuse during pregnancy.

Braeleigh goes to public school, has friends, and experiences childhood like normal kids, but with modifications. Instead of going to soccer practice, Braeleigh heads to physical therapy sessions. Everything from balance to vision is impacted by Apert Syndrome.

“Any activity where she is using her hands is modified because her fingers don’t fully bend,” Carol Ardelean, her grandmother told me. “Braeleigh wears glasses and does physical and occupational therapy to help her daily life. She’s thriving, growing, and learning. Braeleigh has already been through twenty-six extensive surgeries and number twenty-seven is scheduled in November. She and other kids who face these surgeries are so much braver than we can ever imagine.”

Apert’s can be genetic or in Braeleigh’s case, it’s completely spontaneous with no family history. While the defect is random, individuals with Apert Syndrome can pass the disorder on to their children. Braeleigh’s doctors’ estimate there is a 50 percent chance that her children might inherit it.

Picnic with a Purpose

On September 23, the public is invited to attend the 2nd Annual Craniofacial Picnic at Shelter 16 in Noble Park The goal is to bring families, friends, and neighbors together to show support for Craniofacial Awareness. Have your face painted, watch a magic show, and get custom creations from a balloon twister.

A little more about Apert’s

There are three primary conditions of Apert Syndrome.

Syndromic Craniosynostosis puts pressure on the baby’s growing brain and leads to possible developmental problems.

Midfacial Hypoplasia, identified by bulging eyes and an underbite, causes the bones in the jaw, cheeks, eyes, and ears to grow abnormally. Additionally, it can cause vision, hearing, and breathing problems.

Syndactyly is the third condition, meaning children are born with webbed fingers and toes.

“Picnics are held across the country for craniofacial acceptance,” Ardelean told me. “Usually, one of these picnics is the only place kiddos like Braeleigh will meet someone who looks like her. It’s so important for them and their families to know they aren’t alone. We’re in this together!”

The picnic is completely free to attend, however, sponsorships and donations are greatly appreciated. A few donations were made last year, but the majority of it was paid for by Ardelean family. Anyone can help donate food, drinks, and paper goods. Cash or check donations are very helpful as funds can be applied wherever they are needed. Twenty-four guests were in attendance last year, and organizers hope to have even more this year.

Caregiver Support

If you have ever been a caregiver, you know how important it is to have a support system. Unfortunately, since Apert Syndrome and other craniofacial disorders are so rare, there aren’t many resources other than a few social media groups. A caregiver’s road can be lonely and scary. Be a listening ear, a shoulder to cry on, and offer encouragement however you can.

Public Awareness & Acceptance

Not everyone looks the same, and that’s okay. We can all help to promote inclusion and awareness by talking with our children.

“Words can be very hurtful, especially to a kid,” Ardelean told me. “Too often, we see negative reactions from kids and adults. It hurts both of us, but it hurts Braeleigh more. Don’t stare, point, or laugh. Be kind and teach your child the same mannerisms.”

It’s important to explain that just because someone looks different than they do doesn’t mean they don’t have the same feelings, hopes, wishes, and dreams. Remind them that some people are born with differences in their bodies and beauty comes in many forms.

To donate or get information about the picnic, contact Carol Ardelean at 270.665.0796 or cardelean90@gmail.com. You can also visit their favebook page at Second Annual Southern Midwest Craniofacial Picnic. If you would like to donate to the picnic, please send to Cash App is $CarolArdelean and Venmo @Carol-Ardelean. 