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August 21, 2018
El Dorado News Times
Anniston Claire Sanders was diagnosed with Treacher Collins Syndrome when she was just 24 hours old. Photo contributed.

Anniston Claire Sanders was diagnosed with Treacher Collins Syndrome when she was just 24 hours old. Photo contributed.

Hampton family hopes new film will spread awareness of rare disorder

By Kaitlyn Rigdon
This article was published November 21, 2017 at 5:00 a.m.

The new movie “Wonder” is hitting close to home for one Hampton family who has a daughter with the same condition as the young boy in the film.

The film, which was released Friday, tells the story of a young boy with Treacher Collins Syndrome who is trying to fit in at a new school and show everyone he is just like them.

The experience is one the Sanders family knows well.

Anniston (Anni) Claire Sanders was born at the Medical Center of South Arkansas on Sept. 23, 2015, to parents Derek and Beth Sanders, and was diagnosed with Treacher Collins Syndrome at 24 hours old.

“I remember specifically praying that others would just accept her for who she is and that there would eventually be some type of awareness for this extremely rare condition,” Beth Sanders said in an email. “Fast forward two years later, and there is an actual movie out in theaters based on the book ‘Wonder’, with five star actors and actresses playing the parts.”

Beth Sanders believes the movie will give people a better understanding about the condition.

Treacher Collins Syndrome, according to the National Craniofacial Association, affects the head and face with the following characteristics: down-slanting eyes, notched lower eyelids, underdevelopment or absence of cheekbones and the side wall and floor of the eye socket, small and slanting lower jaw, forward hair and underdeveloped, malformed and prominent ears. The syndrome affects 1 in 50,000 children.

Click photo to enlarge

Anni has undergone eight surgeries, most recently being a jaw distraction surgery at Arkansas Children’s Hospital, which was the most invasive and difficult surgery yet. She was born with a small, recessed jaw, which makes it difficult for her to eat certain foods.

Having a recessed jaw also resulted in Anni having severe sleep apnea and put her at risk for choking easily.

The surgery involved placing two distractors, which are like metal rods, on each side of her jaw.

“We had to turn the ends of those three times a day for three weeks with a device that was sort of like a screwdriver,” Beth Sanders said.

Each turn moved her jaw forward 0.3 mm, and they were able to move her jaw forward three-fourths of an inch.

“It has made a world of a difference but was also a painful experience for her,” Beth Sanders said.

She will have the rods removed on Jan. 9 and they believe her sleep apnea is gone.

Anni loves playing with her two sisters, dancing, watching cartoons, acting silly and playing outside. She gives high fives and fist bumps to everyone she meets, her mother said.

“If I could give advice to another parent that just found out their child had Treacher Collins Syndrome or any other craniofacial condition, I would tell them to just breathe, that everything is going to be OK,” Beth Sanders said. “I remember being so terrified in the beginning. Looking at her now, I wouldn’t change a single thing about her.”

She said she hopes that “Wonder” will teach people to be kind and to think twice before saying something hurtful to someone just because they look different from them.

The family has had their share of scary moments when having to hand Anni over to surgeons, but believe the experience has been humbling and a blessing. They have learned to not take things for granted, like begin able to fully hear or eat meals normally instead of through a feeding tube.

“Teach your children and grandchildren that everyone is different, and that it’s OK to be different,” Beth Sanders said. “When given the choice between being right and being kind, choose kind.”

Anyone can follow Anni’s journey on her Facebook page “Anniston Claire’s Journey.”

Kaitlyn Rigdon can be reached at 870-862-6611 or krigdon@ eldoradonews.com.

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