When Rebecca Callaghan was pregnant with Matilda Callaghan, doctors decided to induce labor early due to excess fluid around the fetus.
And it wasn’t until a half-hour later after was born that doctors realized something was wrong.
Doctors first believed she had a blue bruise on her face that spread across one side of her body. Then, they informed the parents it was a birthmark. But two weeks later, Matilda was diagnosed with Sturge Weber’s syndrome, a very rare neurological skin disease that also causes paralysis, learning difficulties and seizures.
The little girl became so sick, so quickly that she was taken to the Adler Hey Children’s Hospital in Liverpool, England. Within days, the parent’s glee turned into horror over the fact that they may lose their child.
“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 told Daily Mail.
In addition, the parents found that Matilda had two holes in her heart. And while there was a high chance she would not survive, Matilda made it through surgery. Matilda also started laser treatment to remove her unusual birthmark, which can take up to 16 years before it’s completely removed.
“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 afterward, which then gradually fade away again,” Matilda’s dad Paul told the outlet.
“People think we are bad parents – that we have somehow caused Matilda to look like she does.”
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However, despite the regular, painful laser treatments, Matilda was a happy girl.
But many were quick to stare at the little girl and would even ask Paul and Rebecca if they allowed their daughter to get burned.
To which Paul says on the matter: “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.”
The disease has also caused Matilda to almost become blind. She also is not able to walk but thanks to a special walking frame, she’s been able to take a few steps herself.
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“Despite everything she has been through, she has a smile for everyone. She’s doing fantastically well,” her father said.
“We are unbelievably proud of Matilda, she is just amazing–we just live every day as a bonus.”
Today, Matilda is 11-years-old. In June 2019, the family posted what looked to be a recent photo of the girl in her wheelchair. The crowdfunding page posted a few years ago was seeking to raise $6,300 to help raise money for a new wheelchair.
”We are fundraising to provide her with new chair so that she may continue to do the thing she loves the most, spending time outside and away from [sic] crowds,” the page states.
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