Posted on 26th Jun 2018
“Lila is a determined 4-year-old with a big character and light-hearted attitude to life. She enjoys art, music and dancing. Her favourite colour is pink,” said Natalie, Lila’s mum.
Lila was born with two major heart conditions and underwent her first cardiac surgery at 19 hours old. After a challenging 12 months, Lila was diagnosed with CHARGE syndrome.
“She has difficulty with balance and her hearing and peripheral vision are also affected. Because of this, physical activities are a bit of a challenge for Lila but she is always determined to have a go,” said Natalie.
Lila’s little brother, Oscar, is 2 years old and enjoys riding his balance bike and visiting the local park where they have play dates with their cousins.
“Lila had a go on Oscar’s bike but couldn’t ride like the other kids, it just didn’t have enough support for her and she didn’t feel safe,” said Natalie.
During a visit to the Royal Institute for Deaf and Blind Children, Natalie noticed a flyer for Freedom Wheels on the notice board. She asked Lila’s therapist about the service and they set up an appointment at TAD’s Assistive Technology Centre in Northmead.
“The Freedom Wheels therapist was very knowledgeable, patient and able to accommodate Lila’s needs. Lila was nervous to try sitting on the bike but she was also very excited by its pink colour, little basket and fairy stickers,” said Natalie.
Natalie said she cried tears of joy when she saw Lila riding for the first time, “I was super happy for her! Lila doesn’t see her bike as being different, she sees it as, her special pink, fairy bike and she can ride it with confidence just like her brother and cousins do theirs!”
Now when they go to the park Oscar and Lila both ride their bikes with their cousins. Natalie can also catch up with family while feeling comfortable that Lila is safe.
“Being able to expose your child to activities that are typical for their age is so important, it means a lot to be able to do this and know that they are going to be safe,” said Natalie.