A Kansas family is trying to raise money for surgery that will give her daughter the ability to smile due to a rare disorder that causes facial paralysis.
Just 14 hours after Ava Butler was born in July 2015 in Wichita, she was rushed into the NICU when her pediatrician noticed she wasn’t feeding.
Three days later, doctors told her mother Rachel that Ava, now three, was suffering from Moeibus Syndrome, which immobilizes facial muscles, and she would not ever be able to smile, frown or pucker her lips.
Now, Butler, 27, and her partner are working to raise awareness of the condition and hope to raise enough funds for the procedure – which can cost upwards of $100,000 – so their daughter is no longer teased about her appearance.
‘I was completely and utterly overwhelmed. I already didn’t know what I was doing as a new parent but throwing this diagnosis on top of it really put me through the ringer,’ Butler said.
‘They handed us a pamphlet about Moebius Syndrome, but we had questions that the specialists couldn’t answer.’
Moebius Syndrome is a rare congenital disorder characterized by paralysis of cranial nerves, most commonly the sixth and seventh.
If the sixth nerve is paralyzed, the eye cannot turn outward past the midline, according to the National Organization for Rare Disorders.
If the seventh nerve is paralyzed, sufferers cannot smile, frown, pucker their lips, close their eyelids or raise their brows.
Other deformities can occur including club feet, hearing loss, delayed motor skills and cross eyes.
Doctors are unsure of the exact cause because, in most cases, Moebius Syndrome occurs sporadically.
It is estimated to affect about one in every 50,000 live births in the US.
Treatment usually requires visiting numerous specialists including neurologists, ophthalmologists, plastic surgeons, otolaryngologists and speech pathologists to address the various symptoms.
Butler said that she truly didn’t process the diagnosis until a few days later when she did research on her own, which ended with her bursting into tears.
While most comments from strangers are positive, Rachel says that Ava will get an odd comment from her peers about her physical appearance out of curiosity.
‘We get a lot of questions from little kids who notice Ava’s facial features and we understand where they are coming from,’ she said.
‘It’s the comments from the adults that really got to me. Over the years we’ve had one of her cousins ask: “Why do her eyes look so crazy?” We’ve also had a grandparent say: “Make that face again, my granddaughter can’t make faces”.’
Ava’s parents are now looking hoping to raise enough money so their daughter can undergo surgery that would give her the ability to smile.
The procedure involves transplanting a muscle from a larger area of the body to both sides of the face.
It is usually done one side at a time with a 12-week recovery period in between.
The Butlers are going to be meeting with surgeons for consultations over the summer with the surgery hopefully taking place next fall.
‘I no longer worry about the things that I worried about when she was diagnosed. I feel that we have adapted to the situation at hand and we have learnt to overcome any challenges,’ Butler said.
‘I dread the day she comes home from school and tells me about how another student picked on her for her differences.’
Butler says Ava has never given any indication that she feels or looks different, but says this is unlikely to remain as she gets older.
‘Right now, her classmates are super protective of her. She’s the smallest in her class and I love seeing how much they help each other out,’ she said.
‘I feel that our worries are the same as any parents. I want her to grow up happy and healthy, but I also want her to know that this disability is a part of her story, but it doesn’t define her.’
The family has started a GoFundMe to raise money for Ava’s medical care and future surgery.
So far, more than $4,200 has been raised out of a $5,000 goal.