Strong Voices

Six-year-old Marlee is full of sunshine. “She’s always smiling, always happy and so curious about everything,” says her mum Christina.

But Marlee’s journey forward has been a difficult one. When she was just two and a half, she was diagnosed with a rare condition called Pitt-Hopkins syndrome, which affects how her brain and body grow. Getting that diagnosis took time and it meant that early on Marlee missed out on therapies that could have helped her.

Marlee was seven months old when her parents noticed she wasn’t hitting the usual baby milestones. Their GP reassured them that all kids develop differently. But by the time Marlee turned one, they were still worried and saw a paediatrician. Tests in New Zealand didn’t give answers, so her DNA was sent all the way to Helsinki. Then COVID hit and everything was delayed.

Finally, the results came back: Pitt-Hopkins syndrome. Fewer than ten other people in New Zealand have it.

As a toddler, Marlee was in a wheelchair most of the day. She couldn’t feed herself and got tired easily. “We had to do everything for her,” says Christina.

Because her diagnosis came late – and then COVID got in the way – Marlee missed out on the early therapy that could have made a big difference. And because her condition is so rare, there weren’t any local specialists or intensive therapy programmes to help.

But then, something amazing happened.

Last December, when Marlee was five, an international therapist ran a special three-week therapy ‘boot camp’ in Rotorua and Marlee got a spot. Every day, she had sessions focused on physical and occupational therapy.

Before the boot camp, Marlee could only walk a few steps and often tripped. She couldn’t duck under things or track objects well. Her family hoped the therapy would help her walk better – and maybe even feed herself.

The therapy was expensive, and because Pitt-Hopkins syndrome is so rare, Marlee didn’t qualify for funding. Then Christina heard about IHC’s Family-Whānau Liaison Service. They suggested she apply to the new IHC Family Fund, and she got a grant to help cover the costs.

“You’re so stretched as a parent of a disabled child,” Christina says. “You never sleep. You’re caring 24/7. Having someone who knows the system and has your back is amazing.”

The therapy camp turned out to be life-changing.

“She started running – she’s never done that before and she’s quite fast!” says Christina. “She can walk up and down steps now. She made a strong bond with the therapists, which never happens here because sessions are so short and far apart.”

Marlee’s eye contact improved. She started noticing things around her and learning faster. She even began picking up small skills like holding a pen.

When she returned to school, everyone noticed the difference. She’s out of her wheelchair more, walking to the sports field and joining in with her classmates. She’s even started tapping people’s hands to get their attention – something she couldn’t do before.

At home, things are easier too. Marlee can now feed herself finger foods. “We don’t have to feed her while trying to eat ourselves,” says Christina. “It’s a big change. A huge thank you to the wonderful donors to the IHC Family Fund who helped Marlee on her way.”

Go to www.ihc.org.nz/donate to make a lasting difference in the lives of families like Marlee’s.