Five-year-old Matilda Callaghan was born with a port wine stain birthmark that ran along the right half of her body and also covered much of her face. Within weeks of her birth, it became clear the birthmark was an indicator of Sturge Weber Syndrome (SWS), which is a very rare disease that affects the skin and causes neurological problems.
SWS manifests as light purple polka dots that are regularly removed with a laser procedure to prevent them from spreading into Matilda’s brain or other organs. The dots usually return within six weeks. The disease can cause severe health complications, including epileptic seizures, paralysis and glaucoma along with developmental delays. Matilda has suffered though all the symptoms.
In her short life, Matilda has undergone several surgical procedures. The first one was done soon after she was born due to her windpipe being fused with her esophagus. Weeks later, it was discovered Matilda’s heart had two holes that needed repair. Currently, she cannot walk and has a very small vocabulary of words.
Matilda’s parents sometimes struggle with caring for her but try to spread a message of awareness and hope to other families dealing with SWS. They are also trying to raise money to get Matilda a special wheelchair, so she can enjoy more outings with her family.