The parents of 5-year-old Matilda Callaghan are trying to raise awareness of their daughter’s life-altering condition.
When Matilda was born in October 2010, doctors noticed that half of her face and much of her body was covered in a port wine stain. These markings were the first sign of Sturge-Weber Syndrome, and the start of multiple hospital stays, health problems and developmental delays.
Sturge-Weber Syndrome is a congenital disorder typically characterized by a port wine facial marking and neurological abnormalities, and it may also consist of irregularities to the internal organs and the eyes, according to The Sturge-Weber Foundation. The condition causes excessive growth of blood vessels on the surface of the brain, which leads to issues in brain functioning, including seizures.
As a newborn, Matilda suffered her first potentially life-threatening condition called Oesophageal atresia and trachea-oesophageal fistula, which caused her to stop breathing while being fed, according to a GoFundMe page created by Rebecca Callaghan, Rebecca's mother. At 7 weeks of age, Matilda underwent open heart surgery and has since experienced various health problems including glaucoma, epilepsy and partial paralysis.
“Every day [my parents] try to raise awareness of my conditions especially SWS through my story […],” reads the Go Fund Me profile through Matilda's voice. “I have lots of problems and a significant development delay, I still can’t walk or talk but I’m trying […] I play and smile and make people laugh because I can do that, Mummy and Daddy tell me every day how special I am, how much I am loved and I know I am.”
The port wine body markings need to be regularly removed in order to prevent further internal organ damage, Lift Bump notes. However, the markings come back frequently, which has led to criticism from onlookers.
“The laser makes the mark look more red and angry,” Paul Callaghan, Matilda’s father, said in a 2013 The Sun interview. “We’ve even had people accusing us of leaving her too near the radiator. I wish they could see past the mark to what an angel she is.”
The GoFundMe page, which was created to raise money for a wheelchair for Matilda, has raised over $10,000 in six days, surpassing its $7,200 goal.