Everything Under The Sun: The Princess That Sometimes Has Polka Dots

Matilda as a baby.

Life has been something of a challenge for little Matilda Callaghan since the day she was born. She was delivered early, since doctors had determined that there was too much fluid in the amniotic sac. Even so, both parents were quite excited to meet their little daughter.

Little did they know the challenges that awaited their young daughter from the start. Her appearance was the first clue, since it appeared that her face had been bruised. From her appearance, doctors diagnosed her with STURGE-WEBER SYNDROME, a non-inherited congenital condition, known for its characteristic port wine stain. In addition, those who have the disorder, experience neurological effects, including seizures, from proliferating blood vessels on the surface of the brain. Some also have hemiparesis, which involves a weakening of one side of the body and glaucoma, particularly in the eyes in the same area as the port wine stain.

But Matilda had something else that required immediate surgical attention - her trachea and esphagus were joined and she had two holes in her heart. Her father, Paul, recalled, "We'd been so excited at our baby's arrival, now within a matter of hours, we didn't know whether we would even see her alive again." However, no one realized the fighter that she turned out to be. By the time she was two months old, she had survived two major surgeries, through her parents' realistic concerns about her well-being.

Paul said, "We were terrified when she was wheeled down for 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." The life threatening problems had been fixed, but she still had the effects of Sturge-Weber.

For Matilda, that meant that she is affected by hemiparesis, glaucoma, a seizure disorder, and learning disabilities. She also has laser therapy every few months to fade the port wine stain that covers more than the top three-fourths of her face. Generally, right after the laser treatments, the port wine stain becomes darker, before it begins to fade more. That gives her face the appearance of large polka-dots, leading to a loving nickname of Polka-Dot Princess. Throughout this difficult early beginning, though, this impressive little girl greets everyone with a smile on her face, a spirit that glows.

Father, Paul, discussed his concerns about how others view his daughter, "We do get people staring at Matilda when she goes out - especially after she's had the laser treatment - which is hurtful. We have even had people accusing us of leaving her too near the radiator, and causing her face to go red. People think we are the bad parents - that we have somehow caused Matilda to look like she does....I wish they could see past the birthmark and see what a wonderful little angel she is."

The port wine stain becomes darker right after laser treatments.

Meanwhile, Matilda continues to move forward. She's a growing girl, can walk a few steps with the help of a walker, has had surgery on her right eye to relieve pressure, has also had surgery to relieve throat constrictions caused by scar tissue. Since she is a growing girl, she does outgrow her assistive equipment. Her parents started a GoFundMe page in order to raise money for a new wheelchair which costs £5000. Her page states, "They've had to order it already as I'm too big for the one I've got and I've tipped it over a few times. Please help my mummy and daddy spread awareness and if you can help them in any way we would really be so grateful." Here's the location of the GoFundMe page: https://www.gofundme.com/matildacallaghan.