Meet the Polka Dot Princess who is fighting the odds to keep living

Matilda Callaghan/GoFundMe

Matilda Callaghan's face and the right half of her body are covered in purple polka-dots. It is not because she got creative with the markers, nor because her parents left her too close to the radiator, which they have had to clarify in the past.

Callaghan was born with Sturge Weber Syndrome (SWS), a neurological and skin disorder that comes with a host of problems other than her port-wine stain birth marks. The rare disorder comes with visual impairment, epilepsy, glaucoma and paralysis on her left side. Callaghan's throat needed immediate surgery after her birth to repair an issue with her esophagus.

"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, Paul, recounted the first hours to Daily Mail.

At seven weeks, Callaghan went in for an open heart surgery to fix the two holes in her heart. At one point, a seizure left her with out the use of her left side. Callaghan needs the purple markings removed by laser to prevent them from spreading to her organs or brain and causing even more damage.

The laser is what causes the distinctive polka-dot pattern on her face by burning the blood capillaries under Callaghan's skin. They polka-dot look will stick around for two to three weeks. The birth mark will return and need to be removed by laser again every six weeks, and doctors believe Callaghan will need to continue these removals every two months until she is 16 to prevent damage to other parts of her body, local news reports.

Callaghan is now five years old with limited motor skills, an inability to walk and very limited speech. She and her parents have worked hard to spread awareness and fund research for a cure of the rare disease. But recently her parents started a GoFundMe page with a desperate plea for the specific wheelchair Callaghan needs.

Within nine days they raised the necessary funding. The wheelchair Callaghan was formally using was too small for her, and she had fallen over multiple times. The new one will enable Callaghan to continue developing her muscles, and her parents are excited to be able to take her out into the country with this new one.

"We are unbelievably proud of Matilda, she is just amazing – we just live every day as a bonus," Paul told local news.

See a video of Matilda below:

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