Mom hopes book donation will increase understanding of daughter's condition

Candice Robin has undertaken a personal initiative to offset potential difficulties that her 18-month-old daughter, Anna Lise, may encounter from others once she enters the public school system.

Anna Lise, who was born with Treacher Collins syndrome, a congenital facial-cranial disorder affecting the development of bones and other tissues of the face, will hopefully have better support from her peers and teachers as a result of her mother’s effort to create awareness of her condition.

Robin on Monday presented St. Landry Parish school officials with 200 copies of the novel “Wonder,” which describes the personal journey of a fifth-grade student who displays Treacher Collins symptoms and receives initial ridicule from his classmates.

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The individual efforts by Robin, who intends to send her daughter to public schools in he Leonville and Port Barre school zones, raised $2,000 to purchase 200 copies of the book, which will be distributed to school libraries parish wide in order to raise awareness of the disorder.

“Hopefully having students read the book will make them aware of the matter," Robin said. "The word which comes to mind is ‘kindness’ when you finish reading it and how that plays a big part in resolving issues.”

During her fund-raising campaign, Robin said, she received money from selling baked goods and T-shirts, and a GoFundMe account set up on a Facebook page. In addition, Robin said, she also received a generous donation from an area businessman who prefers to remain anonymous.

A movie associated with the book is scheduled for release sometime in October. The movie features Julia Roberts and Owen Wilson as parents of a boy with Treacher Collins syndrome, Robin said.

A trailer of the movie can be seen on YouTube.

Sara Sharp, who attended Monday’s presentation, said Robin can expect the necessary support from the Louisiana State Department of Education.

Superintendent Patrick Jenkins said he and other school officials will meet with principals and administrators later this month to inform them of the book’s contents and how he expects them to incorporate it into the curriculum.

“It’s also fits in with September and October being anti-bullying months in our school system,” said Jenkins.

Jenkins said he is suggesting having teachers first assign the book to their students and then viewing the movie as a reward for their efforts at engaging the reading material.

Robin said she and Anna Lise have already encountered some menacing glances and comments from those outside the family.

“Actually, I had that situation happen at a store recently when an employee there asked, ‘What’s wrong with her face?'"

Robin said that instead of becoming outwardly angry, she explained her daughter’s condition to the employee with the hope of providing a better understanding of the matter.

Even at her young age, Anna Lise spends most of her weekdays at doctor’s appointments. She also wears a hearing aid, which Robin said should help alleviate some of the hearing abnormalities associated with Treacher Collins.

“Her hearing is muffled right now," she said. "She is also undergoing treatments by audiologists, speech therapists and cranial facial specialists at Children’s Hospital in New Orleans. Just her hearing aid was $5,000.”

Robin also anticipates her daughter undergoing numerous operations to correct most of the symptoms.

There is evidence, Robin said, that Anna Lise’s condition can be traced to members of her husband's family.

So far, Robin, who also has a 4-year-old son Konnor, admits her effort has been an arduous task, but in many ways it has been also been gratifying.

“It’s been a difficult journey, but one that I wouldn’t change for the world,” she said.