An Australian mother has started a campaign to help raise awareness for a syndrome that has left her baby girl with epilepsy, glaucoma, mental delay and a bright red birthmark on her face.
Mandy Lonergan, 30, from Queensland, could tell something was not quite right when she gave birth to her daughter Sophia, the Daily Mail reports.
At first, doctors believed the baby’s bright red complexion was just a result of birth. But after Sophia began suffering seizures at just 10 weeks old, Lonergan and her husband, Ryan, feared the worst.
The child was diagnosed with Sturge-Weber Syndrome (SWS). The disorder is a neurological condition that can cause facial redness, epilepsy, glaucoma and mental delay.
Sophia is nearly 2 years old but cannot sit, crawl or feed herself. She has the red spots all over one side of her body and has trouble recognizing her mother and father.
Lonergan says dealing with her daughter’s condition is hard enough, and yet she still has to deal with strangers making “insensitive comments.”
“I understand she has a bright red face and people are going to look and people are curious - especially children - we understand that,” Lonergan told Daily Mail Australia. “But it’s the naive and insensitive comments that just aren't necessary.”
On one occasion, a woman even accused Lonergan of burning her baby girl.
“People have asked me have I burnt her? Is she sunburned? What’s wrong with her face? What’s that on her face? Is that a rash?” she explained..
“People have taken their children as if to get away from us, as if it’s contagious. It’s not bloody contagious,” Lonergan continued. “I used to get very anxious and teary and I’d just go home but now I’m open for a dialogue if you want to talk about I’ll talk about it.
“It’s not always meant to be hurtful but what they don’t realize is that it is and it’s not so much to me anymore but when Sophia’s a teenager - if she can comprehend what’s going on around her - she’ll struggle with people just saying stupid things like that," she added.
Lonergan says they won’t know the full extent of Sophia’s condition until she is 4 years old.
“My heart broke but it wasn't for me because my life is okay, I’m okay but for her we don’t know what it’s going to mean for her life,” Lonergan said. “Without sounding ridiculous I’m a really nice human being," she added. "I care for everyone, I'm non judgmental, I am so sweet, I worry about everyone so then I thought Why me? Why did I get this journey and path?
“But as my mum reminded me, all those characteristics are why she came to me because she needs all of those things," Lonergan recalled.
“We didn't care about a birth mark (sic) that wasn't going to be an issue for our family," she explained. "Then when she started having seizures it was life-changing in that instant.”
Sophia has undergone two rounds of laser treatment for her facial birthmark. Her mother says the birthmark can harden and become pebbly and overgrown if left untreated. Sophia also has to take medication to regulate her seizures and uses drops for her glaucoma.
Sophia’s condition has inspired Lonergan to start a social media campaign called “Sauce Ya Face.”
The campaign calls for people to smear sauce on their faces and then nominate three other people to do the same. The mother hopes the campaign will gain the attention of Ellen Degeneres so that she can go on the show and raise awareness about SWS.
Lonergan hopes that her child will have the chance to grow older and be able to walk down the street without people staring at her birthmarks.
“We want her to be strong and fierce,” she said. “We won’t know if she can comprehend the world around her until she’s older.
“Let’s give her a good background so if she does get to be older and understand she knows that we fought for her and we believe in her and she’ll be okay," she added.
Despite claims that Sophia may never talk, the child has uttered the words “mum,” “dad” and the color “brown.”
“We’ll never underestimate her but we haven’t allowed ourselves to think that far ahead,” Lonergan added. “If she could walk that would be major and feed herself. I know they’re only basic things for some but for us that’s huge.”
Photo Credit: Daily Mail, Mandy Lonergan