Rebecca Callaghan experienced this type of problem in 2012 when the doctors told her that there was excess fluid around the fetus during her pregnancy. As a result, labor was induced early.
Little Matilda came into the world and unfortunately, it wasn’t long before they realized there was a problem. About a half hour after her birth, a bruise, which stretched from one side of her body to her face was identified as something different.
Doctors then told the parents that it was a birthmark. About two weeks later, a diagnosis of Sturge Weber’s syndrome came in. It is a rare neurological condition that can lead to seizures, learning difficulties, and paralysis.
Very soon, Matilda became ill so she was taken to a hospital in Liverpool, England. An event that should have been happy turned out to be very stressful, because the parents were unaware if they would see their daughter alive again.
The father said: “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.”
In addition to her diagnosis, they found out that she had two holes in her heart. Matilda was about to give up, and she recovered through surgery. She then had laser surgery to start with the removal of her birchbark but it will probably be there for about 16 years.
Paul, her father said: “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 afterwards, which then gradually fade away again.
“People think we are bad parents – that we have somehow caused Matilda to look like she does.”
Matilda turned out to be a very happy and positive little girl.
Many people would stare at her, even asking if she had been left too close to the radiator. It was frustrating for the parents because the disease also caused Matilda to become mostly blind. She couldn’t walk, and it has been a struggle.
Her father continued, saying: “Despite everything she has been through, she has a smile for everyone. She’s doing fantastically well.
“We are unbelievably proud of Matilda, she is just amazing–we just live every day as a bonus.”
Matilda is now eight years old and continues to be a positive force in her family’s life. We wish the family all the best and hope that they have many years of happy times together.
