Paul and Rebecca Callaghan were expecting their baby to arrive in 2012. And it wasn’t an easy pregnancy because there was excessive fluid around the fetus.
The doctors had to make a difficult decision, to induce labor early.
And they successfully delivered little Matilda Rose.
When she came out though, the doctors noticed that Matilda had a big blue mark on one side of her body. The doctors thought it was a bruise at first but half an hour later, they deduced that it was a birthmark.
Two weeks later, they find out what the birthmark really was.
Matilda was diagnosed with Sturge Weber Syndrome (SWS), a rare neurological and skin disorder. This disorder also comes with visual impairment, epilepsy, glaucoma and paralysis on her left side.
“We were devastated when we found out Matilda had Sturge Weber Syndrome as before she was born we hadn’t any idea anything was wrong. She had to stay in hospital for the first three months of her life and we didn’t think she would survive,” Paul, her father, said.
The mark they assumed was a birthmark was still a birthmark but it was inside her brain instead. This has caused her to have learning difficulties and diagnosed with epilepsy.
Besides that, they also found two holes in her heart and a pouch in her throat.
She also had Tracheoesophageal Fistula, which meant she was born without a tube from heart throat to her stomach, causing her to have digestive problems.
She had her first surgery at two months old to repair the holes in her heart. Since then she’s had more surgeries to build the missing tube from her throat to her stomach.
“We were terrified when she was wheeled down for the surgery – even though she was two months old – she still looked so small to be having such major surgery. Eventually, the surgeon came up to see us and told us the surgery had been successful,” Paul shared.
They realized they needed to begin treatment for her SWS when she suffered from a seizure and she couldn’t move her left side. Matilda needed to have laser treatment for her marks to prevent them from spreading to her organs or brain and cause even more damage.
The polka dots on her face are a result of the laser treatment since it burns the blood capillaries under Matilda’s skin.
These dots stay on her face for about two to three weeks. The birthmark will return though that’s why laser treatments need to be performed every six weeks. The doctors recommended this treatment be done until Matilda is sixteen years old to prevent damage to other parts of her body.
Because of SWS, Matilda is also almost blind and cannot walk. She needs a special wheelchair so she can move around.
But despite all that, Matilda is a fighter and always has a smile for everyone.
“We are unbelievably proud of Matilda, she is just amazing – we just live every day as a bonus,” Paul remarked.
But their troubles are not limited to Matilda’s medical condition. They get troubles outside from other people.
“We do get people staring at Matilda when she goes out – especially after she’s had the laser treatment – which is hurtful,” Paul shared. “We have even had people accusing us of leaving her near the radiator and [cause] her face to go red. People think we are bad parents – that we have somehow caused Matilda to look like she does. They just see what is in front of them and jump to hurtful conclusions. I wish they could see past the birthmark and see what a wonderful little angel she is.”
Matilda is now six years old. She has limited motor skills, an inability to walk and very limited speech. And she and her parents have been working hard to spread awareness and fund research for a cure for this rare disease.
Learn more about Matilda’s journey from the day she was born by watching the video below.
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