When Matilda Callaghan was born, doctors noticed that she had a port wine stain birth mark that covered half her face and much of the right side of her body.
As they would soon discover, this was no ordinary birth mark, but rather an indication of a serious and rare disease that would dramatically alter Matilda’s life.
As the Mirror reports, Matilda suffers from a condition called Sturge Weber Syndrome (SWS), a neurological and skin disorder. The most visible symptom of Matilda’s disease is the dark purple crop of polka-dots that cover her face and body.
Though they are regularly removed via laser treatment — lest they spread to her organs or brain and cause even more damage — they return every six weeks or so.
And this is only part of what Matilda undergoes on a regular basis.
Now five years old, Matilda has already been through more than thirty operations to correct issues related to SWS. The very first one was soon after her birth, when it was discovered that her food pipe was connected to her windpipe resulting in a life-threatening problem. Not long after she had recovered from that procedure, it was time for another one.
Born with two holes in her heart, Matilda had open heart surgery at only seven weeks old.
Sturge Weber Syndrome is associated with a series of possible complications, including glaucoma, epilepsy, paralysis or weakness on one side, and developmental delays. Matilda, unfortunately, suffers from all of them. Her seizures have severely affected her mobility, though she has been regaining movement on the side of her body that was paralyzed.
Despite all of the setbacks, Matilda’s parents are full of hope for their daughter.
“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, Paul, told the Mirror.
Though Matilda can only say a few words and cannot walk, she is able to communicate with gestures. She can say “Mummy” and “Daddy” and loves the quiet of the countryside. Her parents recently set up a GoFundMe page in order to raise money for a specialty wheelchair that will allow the family to get outdoors a little more often.
Matilda’s mother, Rebecca, admits that dealing with all of her daughter’s symptoms can be a strain on the family, but she and her husband are working to raise awareness of her condition.”
“I[T]here are a lot of people around with SWS, and we want people to know we are always here to help,” said Paul.