Sturge-Weber Syndrome, or SWS, is a rare disorder that’s present at birth, and children born with the condition have port-wine stain birthmarks, which tend to occur on the face.
A spotlight was shined on the condition after photos of Matilda Callaghan, 5, went viral on Facebook. The U.K. girl has “polka-dot” birthmarks covering her face and the right side of her body.
What’s more, SWS also affects the nervous system. In Matilda’s case, doctors have removed the dots via laser treatment so it doesn’t spread to her organs or brain, which would cause more damage. They return every six weeks.
Even though she’s only 5 years old, the girl has already been through more than 30 operations to correct issues related to her illness, the Mirror reported. Her first was when she was just 24 hours old.
Meanwhile, she was born with two holes in her heart and a pouch in her throat, and she had open heart surgery when she was seven weeks old.
The girl can only say “mummy” and “daddy,” as well as “yes” and “no.” She mainly communicates via gesturing and tapping her chin, the Liverpool Echo reported.
She is also limited by paralysis and seizures, making it difficult for her to walk.
Her father, Paul Callaghan, said that only so much money can be allocated by the NHS towards getting her a wheelchair. As a result, the family set up a GoFundMe account to get her a wheelchair.
Callaghan told the Echo: “We want to be able to take her for walks in the countryside---we like to get out as much as we can. We use all our money to cater for Matilda’s needs so it’s hard to get holidays which would be our escape.”
The girl enjoys the countryside where it’s calm.
He noted: “Sometimes you can feel trapped in your own environment, it’s a massive strain on us as a family.
“We only have Matilda so we don’t know anything different.
“We are unbelievably proud of Matilda, she is just amazing---we just live every day as a bonus.
“It is just unfortunate it has happened to us, but there are a lot of people around with SWS, and we want people to know we are always here to help.”
But her parents are full of hope for their child.
“No one knows how long life is, there is no indication to say Matilda won’t live as long as anyone else. With help from family, friends, hospitals and doctors, she has completely transformed,” her father explained to the Mirror.
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