Rebecca Callaghan’s pregnancy in 2012 was anything but smooth sailing. Due to an excessive amount of fluid surrounding the fetus, the doctors made an executive decision to induce labor sooner than planned.
It seemed like smooth sailing until about half an hour after little Matilda made her grand entrance. She arrived in the world sporting a large blue mark on her face, which stretched down one side of her body. Initially, the doctors dismissed it as a bruise—oh, how wrong they were.
Fast forward 30 minutes, and the medical team delivered the news: it was actually a birthmark.
Two weeks later, Matilda was diagnosed with Sturge Weber’s syndrome—an incredibly rare neurological skin disease that also brings along unwelcome companions like paralysis, learning difficulties, and seizures.
Things went from concerning to alarming when Matilda became so ill that she was whisked away to Adler Hey Children’s Hospital in Liverpool, England.
In the blink of an eye, the sheer joy of her parents turned to sheer terror. They didn’t know if their tiny warrior would even survive.
“We couldn’t travel with her as she was so ill. As we stood watching her being taken away, we didn’t know if we were going to see her again. 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,” her father confided in the Daily Mail.
The horror didn’t end there—Matilda had also been diagnosed with two holes in her heart.
But Matilda was made of tough stuff. Despite the slim chances of survival, she pulled through the surgery like the hero she is.
The next battle was the birthmark. Laser treatments started promptly, but the road ahead would be long—up to 16 years of treatments, to be precise.
“She has treatment every couple of months, and the laser does make it look more red and angry, and her face is covered with blobs afterwards, which then gradually fade away again,” Matilda’s dad Paul explained to The Daily Mail in 2016. “People think we are bad parents—that we have somehow caused Matilda to look like she does.”
Despite the grueling laser treatments, Matilda remained a beacon of happiness. But the outside world? Not so kind. She was often the subject of stares and jeering. Some even posed the cruel question of whether her parents had burned her by accident.
Paul had this to say about the unsolicited judgments: “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.”
Unfortunately, the disease didn’t stop at birthmarks—it gradually robbed Matilda of her vision as well.
She also faced challenges with mobility. However, a special walking frame provided her with the priceless gift of mobility, allowing her to take a few steps on her own.
Despite her continuous battle, Matilda always had a smile for everyone she encountered. Her father described her as a determined girl with a strong sense of how she wants things: it’s her way or no way at all!
The family endured constant stares, hurtful comments, and outright mockery daily. But through it all, Matilda’s spirit never wavered.
“Despite everything she has been through, she has a smile for everyone. She’s doing fantastically well,” her father shared. “We are unbelievably proud of Matilda; she is just amazing—we just live every day as a bonus.”
Today, Matilda is eight years old. A recent snapshot of her in her wheelchair, shared by the family in June 2019, radiates her resilient spirit.
And the fight doesn’t stop—her family set up a crowdfunding page aiming to raise $6,300 to secure a new wheelchair for Matilda. “We are fundraising to provide her with a new chair so that she may continue to do the thing she loves the most, spending time outside and away from roads and crowds,” the page states.
The page also shared a sombre note: Matilda’s grandfather had recently passed away.
Help spread the word about Matilda’s journey! Together, we can help this brave little girl get the new wheelchair she needs to live her life to the fullest!
