Retreat gives families of sick children time to cherish

Victoria and Jason Kent say Gypsea's diagnosis and treatment has been a rollercoaster ride. PHOTO/ SUPPLIED

This week the annual Supper Club fundraiser takes place, raising money for Rotorua's Ronald McDonald Family Retreat. Rebecca Malcom talks to one of the many families who have benefited from a break at the retreat.

For most kids, the idea of a trip away brings hope and excitement.

But wee Gypsea has learnt enough in her seven years to know that trips away normally mean hospital stays, unpleasant medical procedures and doctors.

So, for mum Victoria, the chance to give the 7-year-old a holiday that didn't involve any of those nasty things was something to cherish.
It came by way of a week long stay at the Ronald McDonald Family Retreat on the shores of Lake Rotorua.

The Kents are one of dozens of families who stay in one of the two retreat houses at Ngongotaha each year, funded by money raised through events like the upcoming Supper Club fundraiser.
It's available to families who have a seriously ill child or have lost a child or parent.
The family from Tihoi, northwest of Taupo, spent a week there in January 2014.

"It was absolutely amazing to be able to go away as a family with no medical interventions, no doctors, no hospitals, just us, as a family.

"Most of our trips away are up here [to hospital in Auckland], we really haven't had much time as a family unit that doesn't involve some care or some procedure.

"It was definitely a once in a lifetime thing."

Vouchers provided by local businesses offered discounted or free entry which allowed the family to do a lot more than they may otherwise have been able to.

"Gypsea in particular got to experience being completely normal and doing completely normal childhood experiences."
Used to having to sit things out, one of the greatest joys was seeing the look on Gypsea's face when she was able to take part in the activities.

"She got to go on the luge. Granted it was with her father but she still got to experience it.

The gondola was amazing and the house itself is so comfortable and homely and the views are just amazing. Honestly, I don't know how to explain the feeling of being able to have a holiday."

Victoria is the first to admit that life since Gypsea was born has been tough. It started at her anatomy scan half way through her second pregnancy, when the sonographer couldn't find a stomach.

Victoria ended up having to give birth in Wellington, but when Gypsea arrived the family thought they'd hit the jackpot when doctors couldn't find anything wrong and thought they'd been mistaken.

Sent home, Victoria quickly realised something was wrong. Her newborn fed every 45 minutes, day and night, and after nine months of weekly visits to the doctors and being sent home told it was "all in my head" doctors ordered a chest X-ray.

"Her left lung was collapsed, her right was full of infection."

An MRI showed multiple congenital abnormalities - "they asked us how have you kept her alive?"

"She had trachial stenosis from the top to the bottom which is quite rare."

A myriad of surgeries have followed. A surgery in 2008 was meant to fix her feeding because they thought it was breathing related. Then in 2009 they realised she'd been born without her stomach.

"It is extremely rare, it's not something that had crossed their minds. When they went to scope her stomach there was no stomach. That was at 13 months old."

Two years later a special surgery was carried out, the first time it had been done on a child in New Zealand, where they made Gypsea a stomach out of her bowel.

It was a huge moment for the family when she no longer had to be tube fed and first started eating.

"That was pure elation. A head exploding moment that my child could eat normally. I always wanted her to eat birthday cake."

That first time Gypsea was able to eat birthday cake left Victoria "overjoyed". It was a major goal achieved, the next is to have her be able to play for decent lengths of time without getting too tired.

"It has definitely been a ride. It has made us grow, it has made us stronger but it has really pushed us to our limits at times. It has pushed our marriage to the limit at times but we always come through stronger."

Victoria says their trip to Rotorua let them take part in activities like mini golf and 10 pin bowling which they just hadn't considered before.

"They're just normal things you just don't think of when you have a sick child."
Simple activities like watching movies and relaxing by the lake made a difference.
"There was so much that was good for the soul. We turned up frazzled and had been looking forward to it for a long time. When we left on the Saturday it was just so relaxed, just a completely different family.

"We were all that little bit closer to each other. We had a nice time away that wasn't fraught with procedures and tears."
The biggest change in Gypsea was watching her confidence "soar".
"She's not a timid child but in the back of her mind is always where are we going now, what doctor are we going to see."

Victoria describes it as "uplifting for my mother soul" to see her child blossoming.

The latest challenge has been watching Gypsea undergo halo traction to strengthen her spine from the severe scoliosis.
Three weeks ago she was put into the traction 24/7 for somewhere between four and six weeks.

"She absolutely hated it but she's getting more accustomed to it."

It will be another one of the long stretches she's spent in hospital - a place she's called home for more than half her life.

"This is it for the foreseeable future. Every day is pretty special with Gypsea because her prognosis they don't know."