Rebecca Callaghan’s pregnancy in 2012 proved challenging due to complications that necessitated an early induction of labor.
It wasn’t evident immediately after birth that there was something unique about their newborn, Matilda. About 30 minutes post-delivery, a significant blue mark was visible on her face, extending down her body. Initially mistaken for a bruise, it was soon identified by doctors as a birthmark.
Two weeks later, a diagnosis revealed Matilda had Sturge Weber’s syndrome, a rare neurological disorder characterized by skin issues, paralysis, cognitive challenges, and seizures.
The severity of her condition led to urgent care at Adler Hey Children’s Hospital in Liverpool, thrusting the family into a whirlwind of worry about her survival.
Her father shared with the Daily Mail the emotional turmoil of not knowing if they would see their daughter again, “We couldn’t travel with her as she was so ill. Watching her being taken away was harrowing,” he recounted.
Further complications arose when Matilda was found to have two cardiac defects.
Despite the overwhelming odds, Matilda survived the necessary surgeries. She also began undergoing laser treatments aimed at reducing the visibility of her birthmark, a process that is expected to continue well into her teenage years.
“Each session leaves her skin red and irritated, appearing worse before it improves. It’s distressing, and it’s hard when people mistakenly blame us,” her father explained, expressing the misjudgments they face from others who do not understand Matilda’s condition.
Despite enduring pain from her medical treatments, Matilda remains joyful and spirited.
The family often encounters public scrutiny over Matilda’s distinctive appearance—some even absurdly inquire if she was burnt by a radiator. Her father wishes people would look beyond the superficial and see the delightful child that she is.
Matilda’s visual impairment and mobility challenges have not dampened her spirits. Supported by a specialized walking frame, she has managed some steps on her own.
Her father proudly states, “She’s fiercely independent. It’s her cheerful disposition that touches everyone she meets. Every day with her is a cherished bonus for us.”
Recently, at the age of eight, Matilda needed a new wheelchair to enhance her mobility and quality of life, prompting a crowdfunding initiative to gather financial support for this essential aid.
The aim is to raise $6,300 to secure a wheelchair that will enable her to continue exploring the outdoors, which she loves dearly.
We invite everyone to spread the word about Matilda’s courageous journey, helping to secure the vital mobility aid she needs to live freely and happily.