Strength in adversity for siblings
SIBLINGS Daniel and Lucy Baran know the power of the Royal Children’s Hospital’s work well.
Between the Bell Park siblings, they have had about 20 operations at the hospital, including a leg amputation for Lucy.
Daniel and Lucy were born with ectrodactyly–ectodermal dysplasia–cleft syndrome (EEC), and Lucy also has fibular hemimelia.
Symptoms of EEC can include missing toes and fingers, and the rare disorder resulted in Daniel being born missing toes.
Fibular hemimelia is a birth defect where all or part of the fibula bone is missing.
Lucy was born with a small, deformed leg, which was later removed, due to her health issues.
Daniel, now 14, was born with three toes on one of his feet, and abnormal bones in lower legs.
He has had about 14 operations, including to remove extra bones and straighten his toes.
His parents, Tracey and George, knew when they were expecting younger daughter Lucy there was a small chance she, too, would be born with EEC.
An ultrasound early in the pregnancy discovered one of her legs was undersized and deformed.
When she was two weeks old, Ms Beaton brought her daughter to the Royal Children’s Hospital to discuss the difficult decision to remove the significantly smaller limb.
When she was 2½ years old, she had a leg amputation and gained a prosthetic leg.
Ms Beaton said as a mum it was always nerve-racking when a child went back into hospital for another surgery.
She said Lucy was “fully able” and could do everything expected of her.
“She’s very easygoing and a very happy kid,” she said.
“Kids who have issues like this tend to grow up with a little extra something — a little bit more patient, a lot of strength.”
Ms Beaton described Daniel as a strong boy with drive.
And the siblings do not let their conditions get in their way. Daniel confidently tackles jiu-jitsu and boxing classes, while Lucy loves ballet and is a Girl Guides member.
Her vibrant personality is even able to shine through her prosthetic leg — she can choose the materials and is currently sporting a colourful patterned number.
Ms Beaton is forever thankful for the care of the hospital, and said she was amazed by the intricate surgery the surgeons performed.
Daniel and Lucy continue to visit the Royal Children’s.
The family visited the hospital about 12 times a year for check-ups and appointments, Ms Beaton said.
“I think the hospital is absolutely fantastic,” she said.
She described the Good Friday Appeal as a “great day” to help the hospital out.
“The work they do up there is amazing,” she said.