Meet the Whitnells, the face of this year’s Piggy Bank Appeal

At their 13 week scan Kristy and Damian Whitnell discovered their unborn son, Jett, was missing his fibula bone. At 16 weeks, a chromosome test reported that otherwise, Jett was fine. At 32 weeks, the doctors discovered a number of other concerning abnormalities in the pregnancy. At 34 weeks a geneticist said Jett might not make it.

On the 26^th of August 2014 Jett was born at Monash hospital. He didn’t leave the hospital for two months.

Jett, who is now four years old, has a gene mutation known as KCNQ2 which causes a condition known as epileptic encephalopathy. This means that he suffers from severe and frequent seizures, sometimes as many as 20 times in a single day. But this is only one element of Jett’s entire condition, which lacks a coverall diagnosis.

“It’s a constant battle, his seizures are never under control”, says Kristy. “We have appointments all the time at the hospital. Whether it be neurology about his seizures, whether its orthopaedics about his bones, whether it’s the rehab team about his muscles.”

A referral from one of the Whitnell’s many doctor’s appointments at Monash led them to reach out to Very Special Kids.

The family describe their first visit to the hospice as “a bit overwhelming” when it came to the level of care the hospice staff provided. “I was amazed by the level of detail they went to so that they understood Jett and what makes him unique and what he likes to do and how he likes to go to bed at night”.

When Jett visits the hospice he loves to participate in music therapy, banging out a tune on the tambourine or the maracas with assistance from the devoted hospice staff. He’s always keen for a good cuddle and a nice relaxing bath.

The rest of the family rely on Very Special Kids services to get them through as well. Kristy and Damian have spent time in the family accommodation while Jett receives specialised care next door in the hospice. This means the medical staff can focus on Jett’s treatments and the Whitnells can focus on being a family. Jett’s brothers Tye, 9, and Axel, 7, love participating in the sibling program and rave about how much of a ball they have while meeting kids who are experiencing similar challenges.

The family is visited regularly by Meg, one of our family support volunteers. Meg usually spends time racing or drawing with the kids, which takes the pressure off Kristy and Damian and allows them to give Jett the attention he requires.

Jett’s lack of an umbrella diagnosis makes it difficult for his family to anticipate the best option for his treatment.

“We try to weigh things up. Like do we get his hips fixed because they’re dislocated, or do we not do that because the surgery could cause him more pain”, Kristy says. “There is no answer and there is no path to follow in terms of what we need to do. For us it’s all about making Jett as comfortable as possible.”

That’s what Very Special Kids is here to do. To support not only Jett, but the entire Whitnell family through circumstances that would be impossible to get through alone.