Lucy

Lucy’s parents Matt and Inga say she is the ‘shining light’ of their family and refuses to let Spina Bifida dampen her determination and zest for life. Spina Bifida describes a group of spinal abnormalities that occur within the first four weeks of a pregnancy when the baby’s developing spine fails to close properly. The name comes from the Latin term for “split spine.”

Lucy, now 10, was diagnosed with the condition and hydrocephalus at her mother’s 20-week scan, and had the first of many surgeries on her spine on the day she was born. A week later a shunt was also placed in her brain to release the buildup of cerebral fluid. Over the first few months of her life, Lucy was in hospital nearly every two weeks with urinary tract infections and very high temperatures.  The infections were reduced with the introduction of catheters and enemas but shunt complications then followed, and Lucy also had surgery on her foot when she six as it was turned in.

Fortunately, Lucy’s health has been good for the past seven years, although simple things such as getting up from sitting on the floor are getting harder and harder. “She takes her time, but she does it,” Inga says. “The one thing we see in Lucy is her determination and her ability to stick at things and we keep encouraging her to keep trying.”

“One of the most memorable moments for us was when we saw her walk at two years of age. It was a very emotional and exciting day for us all.  Once she started she didn’t stop!”

“Lucy loves to sing, go to the beach and swim.  She has the most beautiful voice and loves to surf the waves on her dad’s surf board.  Swimming is actually really good for children with Spina Bifida as it takes all pressure and weight off the body.  She says she feels light and free when she swims.”

Inga and Matt’s advice for other parents of children with Spina Bifida is to remember to always focus on your child not their disability. “If you think about it we may all have some kind of disability of sorts,” said Inga.  “Lucy’s disability is not who she is, it’s just what she has.  Lucy is turning out to be a beautiful young lady and we are very proud of her and her abilities”.