Very sick, very special, and very well looked after

They say home is where the heart is and for this family, it’s all about sticking together. Alissa and Adam Higgins, parents of 15-year-old Jerome, or as they call him Jerry, 9-year-old Lily and 18-year old Claire, want nothing more than for their children to be happy and have the companionship of their entire family.

In 2001, when Jerry was just 3 months old he was diagnosed with Moebius syndrome and osteoporosis. In 2002, his father Adam was deployed to Afghanistan with the Australian Defence Force (ADF), but quickly returned home after a couple of months due to complications with his son’s illness. Adam is still a member of the ADF and fulfils his commitments at both sea and shore to this day. Jerry has since been labelled with complicated issues at later stages, these include epilepsy, autism and cerebral palsy. This means he is ambulant yet requiring assistance of a wheelchair when venturing outside the home. Jerry is also non-verbal and is non-orally fed

A lot of the family time for the Higgins was in hospital early on, as they strived to stay together. Even great grandpa was always around; making sure that feeling of home was wherever they were.
In 2002, after Jerry had been in the ICU, Alissa and Adam were referred to Very Special Kids by The Monash Children’s Hospital, as it was now very clear it was a life-threatening condition.

Alissa and Adam quickly came to find how helpful the support and facilities offered by Very Special Kids were, not only for Jerry, but for themselves and their daughters Claire and Lily.
While they remained dedicated to keeping the family together as much as possible, it was nice for Claire, only 3 at the time of Jerry’s birth, to be receiving some extra company that her parents couldn’t give to her as much as they would have liked to.

Alissa being Jerry’s full time carer, was especially thankful for the Family Support Worker, as she “gave us that assurance, that we were going to be ok, we would have our bad days and she let me know that that’s ok”.

Although many of Very Special Kids services were used by the Higgins family, it took Alissa 13 years to work up the courage to let Jerry actually stay in the hospice. As like any parent, the idea of being away from her ill child was a little hard to comprehend and she had grown accustomed to doing everything herself. It isn’t always easy to admit you need help but now Alissa see’s the benefits not only for her but for Jerry too “he loves it there, he gets a lot of attention, it’s all on him”.

“Jerry gets sick very easily so he hasn’t been able to maintain a regular school attendance. But at Very Special Kids he gets to socialise without the worry of getting sick… And it’s good that he loves it because you don’t feel that sense of guiltiness as a parent when you put your child in care.”

Alissa told us their families unity has increased since Jerry has stayed at the hospice, as having time has allowed for a less hectic lifestyle and they get to be together, and that is what they truly value most, “we’re lucky in that way”.

All the funds you raise at the 24 Hour Treadmill Challenge will go directly to children just like Jerry, who receive 24 hour specialist care at Very Special Kids Hospice. To sponsor a runner visit