'I Am Not Ashamed Of Her': Mom Opens Up About Raising Daughter With Treacher Collins Syndrome

| by Amanda Andrade-Rhoades
article imagearticle image

Poppy Whelan was born with Treacher Collins syndrome, a rare genetic disorder that affects muscles, bones and skin of the face and head. Poppy, a 4-month-old from Brighton, England, doesn’t have cheekbones or ears, but her mother, Sophie Joyce, 22, plans on teaching her that beauty is more than skin deep.

“Poppy is only a baby at the moment, but at she gets older I want to make sure she knows that she is beautiful, inside and out. I am not ashamed of her,” Joyce told the Daily Mail. “Whenever I take her out people stare, and one person even came up to me in a supermarket and asked me what is wrong with her.”

Joyce said she’s “completely in love” with her daughter, but knows she’ll face hardship because of her condition.

“I know Poppy has a lot of that to come in the future, so I want to raise her to be headstrong and to know that it is worse to have a bad personality than a facial disfigurement,” she said.

Still, she’s concerned about her daughter’s future.

“I worry that people will pick on Poppy because she is different," Joyce added, "but I just hope she grows up to realise [sic] how beautiful and special she is.”

Joyce reported that she and her partner James were filled with joy at their daughter’s arrival, but Poppy wasn’t breathing when she was born, so she was rushed to a specialized unit at the Royal Sussex County Hospital.

The first time the midwife put Poppy in Joyce's arms, the young mother knew something was amiss.

“I watched a documentary about the condition a few years ago and I knew Poppy had it because she had all the facial features,” she said. 

“When Poppy was taken away I just wanted her to get better," Joyce added. "She had all wires attached to her and I had to go home without my baby. The facial disfigurement didn't matter at all to me, I just wanted her to be healthy and I wanted her to come home.”

Poppy underwent surgery to help with her narrow airway, another characteristic of Treacher Collins syndrome, but she has since recovered and been given a hearing aid. That doesn’t mean the medical complications are over, however.

“As she gets older she will have a hearing aid screwed in and she may need a jaw distraction to open up her airways,” Joyce said. “Poppy can't make any noise because of the tracheostomy and she will have problems with speech as she gets older.”

Joyce is nonetheless delighted with her daughter.

“She makes me laugh every day and I want her to grow up to be confident in herself,” she said.

Sources: Seattle’s Children, Daily Mail

Image via Daily Mail (Mercury Press & Media Ltd)