Thirteen-year-old Lily is a kind and affectionate girl who loves music, dolls and digging in the garden. She enjoys playing the drums and guitar and is a whiz with technology!
Born with Down Syndrome, and with a complex medical history, Lily has spent her whole life in and around hospitals. In mum Sharon’s words, “Lily grew up in hospital”.
When Lily was six, she experienced a sharp pain in her leg that caused her to cry out in pain.
Not long afterwards, Lily’s leg began to ache more consistently, and walking became difficult. Eventually Lily’s leg started to give way on her. When Lily topped over under the weight of her own backpack, parents Sharon and Graham asked doctors to check her blood.
Having her blood taken was a terrifying experience for Lily, and as Sharon waited with Lily at the hospital, her sense of unease continued to grow. It was midnight when Sharon received the news she had been dreading. Lily had been diagnosed with Acute Lymphoblasic Leukemia just days before her birthday.
The diagnosis was devastating for the family.
“I remember walking into Oncology, dreading it. I’m an occupational therapist at the hospital, so I knew it was not a place you wanted to be with your child. It was my worst nightmare,” recalls Mum Sharon.
Lily became highly traumatised by her hospital experience. The constant needles, ongoing treatments, and teams of doctors and nurses was overwhelming for Lily. Even the delivery of her food to her hospital bed terrified Lily, who struggled to express her feelings in words. To make matters worse, Lily even got a parasite which nearly killed her, at the tail end of her treatment.
Lily’s younger sister Isla also struggled seeing her big sister so unwell, in such distress and turning into ‘skin and bones’ with her treatment.
Luckily for the young girls, Captain Starlight was on hand to deliver happiness just when they needed it most!
For Isla, the Starlight Express Room was “her second home” while Lily was having treatment. Isla loved to laugh and play with the Captains, and was always first to opt in for a serious Kahoot showdown!
For Sharon and Graham, it was a huge relief to have somewhere their youngest daughter could go and be happy while her sister was unwell.
“It was her place to escape from everything that was happening with Lily,” says Sharon. “It makes such a huge difference for children to have somewhere fun to go in hospital.”
While Lily couldn’t leave the oncology ward due to being immunocompromised, Captain Starlight made sure the fun came to her! Regularly appearing by Lily’s bedside, the Captains played music and games with her, and made sure she had awesome activity packs to keep her entertained.
When Lily had to spend both her birthday and Christmas in the hospital, the Captains were there to ensure Lily and her family still experienced the happiness of these special occasions.
Lily was most excited when the Captains made a huge deal of her finishing treatment, making sure this milestone was celebrated in style!
To further aid Lily’s recovery and share their experience with others, Sharon used her Occupational Therapy expertise to co-found the Kids with Cancer Support Group Playgroup. Open to children with cancer and blood related illnesses and their families, the playgroup provides vital connection and support, helping these families through their toughest times.
The playgroup has since become an integral component of the Kids with Cancer Support Group.
It was during a particularly though time for Lily’s family when they learned she would be granted a Starlight Wish. Given Lily’s love of the outdoors and how much nature calms her, the family chose a camper trailer specially modified for Lily’s mobilities, which lets them travel easily to the coast making beautiful life-long memories together.
As Lily moves forward with her recovery, her parents look forward to what her future will hold. “We are so proud of Lily and everything she has overcome. We can see a very bright future ahead for her,” says Graham.
Sharon and Graham are so thankful to those who support Starlight in bringing happiness to seriously ill children and their families. From happiness for an unwell child, to a place of fun for siblings, and even a friendly, familiar face for parents, Captain Starlight has made a huge impact on the whole family.
“The laughter they create is so beneficial,” says Sharon. “It can make your day, even in the darkest of times. We would have found Lily’s hospitalisation so daunting without their presence.”
