Sandy toes, full heart

Marlee loves to play in the sand but her local beach isn’t always the best solution. So, to give her a place for relaxation, enjoyment and a way to connect to her sister, Satan’s Little Helper sent Marlee a sand pit – and her mum Kathryn says it has resulted in full hearts all round.

Marlee has a rare genetic condition called 1p36 syndrome. Symptoms vary from child to child – some have no issues, while others have lots. Four-year-old Marlee falls into the ‘lots’ category, explains Kathryn.

“She has an inoperable heart condition, epilepsy, fluid on her brain, lung problems, her spleen doesn’t work properly, which puts her at high risk of infection, she’s deaf in her left ear, and she has vision problems caused by swelling in her brain.”

Kathryn and Marlee’s dad, Samuel, joke that managing her condition at home is “a full-time job to keep her alive!”

“Marlee is tube fed into her stomach and we have to constantly check her vital signs to make sure everything is as it should be. We also carry epilepsy medicine with us in case she has a seizure.”

Confidence booster

Marlee’s variety of health conditions means she has developed more slowly than her peers. She can’t walk yet and has only just started to sit unaided. However, she attends pre-school and enjoys socialising with kids her age, which has been great for her development!

“Watching others do things she couldn’t, like sit up, gave her the confidence to give it a go and she’s made huge improvements in that area,” says Kathryn. “She’s also trying out new food textures after watching other kids eat!”

Despite being on palliative care since she was born, Marlee was recently discharged from it, which Kathryn describes as “a huge win”.

It’s an indicator that Marlee’s health has improved.

Small silver linings 

Marlee had been spending a lot of time in Starship Hospital on strong painkillers, which her mum says was difficult to manage.

“She was in agony and none of us got any sleep for months. All we could do was offer our hugs and support. It’s been such a battle to get her pain-free – she’s on around eight different medications, which we give her three times a day.”

Kathryn hopes Marlee will be able to remain at home for the foreseeable future – and what better way to help her make some happy new memories than to give her somewhere new and exciting to play?

To do that, Satan’s Little Helper sent her a brand-new sand pit, which Kathryn says has been an instant hit!

“Marlee absolutely loves the sand. We live near the beach but the sand there can get a bit dirty, so having a place where she can indulge herself and I know the sand is clean and safe is amazing for my peace of mind.

“Because of her brain swelling, the sun can also be dangerous for her, so the sandpit has a sunshade, which means she can play safely for as long as she wants.

“Our six-year-old Mila loves playing with her, too – she’s in there all the time with Marlee and it’s been so cool to see them spending time together.”