At 18-weeks pregnant, tests showed Jaime and Jakob’s unborn baby had a possibly lethal type of Skeletal Dysplasia.
"We were told that our baby would not make it," dad Jakob said. "Preparing to have a child is a milestone enough, nothing prepared us for this. We had little to no knowledge of the health sector or how to access the support we needed."
When baby Helena was born, she was ultimately diagnosed with Diastrophic Dysplasia (also known as diastrophic dwarfism) a disorder that affects bone and cartilage structure and development, characterised by hitchhiker thumbs and toes, shortened arms and legs, spinal deformities, a cleft palate, joint deformities, contractures and early onset osteoarthritis.
"To say we were relieved with the final diagnosis sounds odd, but it meant that we had our beautiful little girl and with the right therapies and surgeries she would lead a long, full life," mum Jaime said.
At 10 days old, Helena was transferred to the newborn intensive care ward at The Children's Hospital at Westmead. Now a bubbly five-year old, Helena has been a patient there ever since.
Hospital has been a permanent fixture in the family’s life. Jaime and Jakob have lost count of the number of procedures Helena has endured.
Helena's condition is on the more severe end of the spectrum. The cartilage structure in her airway is compromised and a common cold can put her in hospital on a respiratory support for weeks.
Helena has undergone multiple surgeries to strengthen and widen her airway alone. She had Laryngo-Tracheal reconstructive surgery in 2017 and was in an induced coma for three weeks. She has had a foot tenotomy, had her cleft palate repaired and needs her feet casted every few months to achieve position enough to walk comfortably.
While Helena has spent so much of her childhood in hospital, Starlight has been there helping her laugh and play and just be a kid.
Helena's parents said without the fun of Captain Starlight and the Starlight Express Room, hospital would be a lonely place.
"The Starlight Express Room is a place for children to be children. With Captain Starlight, kids can play and not worry about needles and medical staff. Starlight gives children back the freedom to do what they do best!"
When Helena had to spend eight months confined to hospital, undergoing Halo Traction Spinal therapy, Starlight gave her a space to be with other kids and do the normal kid stuff she was missing out on.
"Going to the Starlight Express Room was like a little outing for her. We'd get popcorn, get her hospital friends and sit down on the beanbags in the Starlight Express Room and watch a movie.
She was able to make a mess painting, entertain the room with her dancing or even settle down with Captain Starlight and a good book."
Jaime says Helena is a bright outgoing girl who loves music. She jokes that starting kindergarten this year has "brought on some extra sass to say the least!"
Helena's condition impacts her mobility. She currently has a walking frame and a manual wheelchair but will be receiving an electrical wheelchair next month. While she isn't able to run, jump or climb like her friends, her mum says she has strength and determination beyond her years.
"Helena can do anything she wants to, she just has to do it in her own way," Jakob says.
As she's got older, noticing she's 'different' to other kids and being stared at has been hard on Helena. Her family says she loves that in the Starlight Express Room, Helena isn’t the 'sick kid,' she's just Helena.
"You can't put a price on having a place where people aren't pointing and whispering without understanding. In the Starlight Express Room, they take Helena as she is."
Helena is facing more Halo Traction therapy next month and will be in hospital full-time until at least the end of the year. She will also need heart and lung surgery in the future.
With ongoing time in hospital, it is vital that Starlight is there for the family.
Her parents agree in saying, "We all need the positive interactions that Starlight provides. Starlight gives kids back their childhoods in the saddest of situations and gives them the strength to keep going, to keep surviving."
