Parents respond to strangers who jump to hurtful conclusions because of their daughter’s rare skin disease

Matilda Rose Callaghan’s Brave Struggle with Trachea Oesophageal Fistula and Sturge Weber Syndrome

Matilda Rose Callaghan’s parents, Paul and Rebecca, had high hopes for their daughter’s future. Sadly, Matilda experienced health problems in the womb and was born prematurely. Her parents and the doctors were not aware of the severity of her health condition until she was born. Matilda has gone through a lot in her life so far, and she’s still struggling. However, with her parents’ love and support, she remains a brave girl.

When Matilda was born, doctors noticed that her face was covered in dark blue and red marks. These marks were a result of Trachea Oesophageal Fistula (TOF) and Sturge Weber Syndrome, a neurological disorder that causes distinctive port-wine stains on the forehead, scalp, or around the eye due to an overabundance of capillaries near the skin’s surface. Matilda’s conditions have resulted in glaucoma, seizures, weakness on the left side of her body, and even learning disabilities.

Matilda undergoes laser treatments to prevent her birthmarks from spreading and affecting her brain or other organs. These treatments leave polka dot marks on her face that fade away after around three weeks. However, since she receives laser treatments every two months, her face is often covered in dots. Unfortunately, strangers often stare at her and make hurtful assumptions that the marks are a result of beating and abuse.

Matilda’s father wants people to know the truth behind his daughter’s appearance. He wishes they could see past the birthmark and see what a wonderful little angel she is. Matilda is unable to walk on her own and has difficulties communicating, but her parents do their best to provide her with the best life she can get. They share her story to raise awareness of the obstacles they face every day.

They share her story because they want people to be aware of the obstacles they are trying to overcome every single day.

Leave a Reply