The Gruber Family - Palmerston North
The Grubers are a family of four, hailing from Palmerston North. Craig and Wendy have two children; thirteen-year-old Cerys, and Charlize, nine. Charlize was born in 2015 and spent over two weeks in NICU due to poor feeding and movement. The family left after this stay to go home as a family of four; little did they know their journey was far from over.
As Charlize was growing Wendy noticed some unusual behaviour from her youngest daughter. “She would hold her breath, change colour, and do weird movements,” she explains, “she wasn’t meeting the usual milestones so when she was two years old, we booked in to see the paediatric team at Palmerston Hospital.” It was there that the family was greeted by a social worker, and Wendy realised something was seriously wrong. “Charlize had ‘Rett Syndrome’ which is incredibly rare – only one in every 10-15,000 births worldwide.” Wendy and Craig frantically researched as much as they could, trying to grasp exactly what they and their precious daughter were in for. “We’ve learned each case is unique with different abilities effected,” Wendy says, “but for most, it’s debilitating over time as they grow.” 
For the following few years, Charlize had several hospital stays locally while the family did everything they could to keep her well enough to function in society. Wendy says her symptoms mimicked “cerebral palsy, epilepsy, autism and Parkinson’s. If you can picture this, you’re close to understanding what she had to endure.” Charlize had issues with her joints, breathing, feeding and communicating – it was understandably a harrowing time for her parents and sister.
In 2022, there came a major turning point when Charlize was diagnosed with pneumonia for the first time – leading to one of many admissions and to Charlize being left unable to swallow food or liquid safely. Late 2023, she had an NG Tube inserted and eventually surgery to put a peg tube into her stomach for feeding. “This time was really overwhelming,” Wendy says, “we were hopeful the surgery would help solve her illness.”
During this tumultuous time, the family found relief in Ronald McDonald House in Wellington – just down the road from where Charlize was on the ward. “Craig could stay within walking distance to us and that was a game changer,” explains Wendy, “being in a new city during an emotionally stressful time is scary to say the least. Ronald McDonald House provided flexibility in case Charlize needed more time in recovery, and took the stress away so we could focus on being with her.”
“It’s really like a home away from home with your every day needs taken care of. The staff and volunteers at the House are so willing to do anything they can to support you and are just so friendly.”
Charlize and the family have recently returned when she became unwell again, and Wendy feels a sense of relief knowing that if further treatment in the future is required, RMHC NZ will be there for her and her family. “The House is like a community where you gain strength by sharing stories and supporting each other in your journeys. It’s a really relaxing, chilled environment that gave us the space to recharge, along with wonderful people that would offer a listening ear when you needed it most.”
“The whole experience was just amazing – having wheelchair accessibility, parking nearby, being able to nap close to the hospital on the really exhausting days, and the food provided – everything is thought about and catered for. RMHC NZ reduces financial burden which is amazing, but it’s so much more than that. They have given us incredible ongoing support and as a family we can’t thank them enough.”