Every parent wants their child to be born healthy, and go through life happy. Having your kid be accepted and included is important to all parents, but it is often out of their control.
Matilda Callaghan’s parents are more than familiar with this worry. Their daughter was born with Sturge-Weber syndrome, a rare skin and neurological condition that causes a port-wine birthmark on the face. Aside from the facial discoloration, little Matilda also has glaucoma, epilepsy, and paralysis. This is caused by excessive blood vessel growth on the surface of that brain, and learning disabilities are a side effect as well.
f that wasn’t enough for Matilda and her parents to bear, the tiny girl was born with her food pipe connected to her windpipe and two holes in her heart. Matilda spent months in the hospital after her birth, and she received 7 risky throat surgeries in attempt to save her life. Even after being sent home, Matilda wasn’t in the clear. She routinely had to return to the doctor due to her frequent seizures.
Matilda can’t walk or talk, and she is severely mentally delayed, but that doesn’t stop her from being a smiling, happy girl. While Matilda’s parents know she may never be a typical little girl, they always tell her how special is, and hope that people will accept her and get to know her. «I wish they could see past the birthmark and see what a wonderful little angel she is. She’s always got a smile for everyone but she’s feisty too.» says Matilda’s father Paul.
Her parents are committed to raising awareness for their daughter’s condition, and continue to provide her with a supportive, loving environment. They eventually had to set up a Gofundme page to raise money for a wheelchair for Matilda. The £5000 chair would help Matilda get around much easier, as her limited mobility causes her to need a walking frame.
In less than a week, the page had exceeded the funding it needed to buy the special wheelchair. The couple is thanking all of their supporters by donating to the Sturge-Weber Foundation UK and Alder Hey Children’s Hospital, where Matilda receives her treatments.
While Matilda still has an uphill battle ahead of her, it is wonderful to know that she not only has the support of two loving parents and a host of strangers willing to help her live a happier life.
Matilda’s father Paul words it best as he praises his brave and strong daughter: «She was a fighter from the moment she arrived into the world and she’s carried on fighting every since. She’s our little miracle.»
It is easy to take our health and our bodies for granted, but Matilda’s story is a reminder of how lucky we are.
