Whole new community for Somerville family

When Jasmine was a new mother, she had gotten used to having little support due relocating as part of her partner’s career in the military.

But when her second-born, Alicia, was diagnosed with a rare terminal illness, she knew she couldn’t continue without more support.

“We were living in Canberra and I just couldn’t do it anymore. Alicia needed round-the-clock care, constant visits to the hospital and I couldn’t take care of her and my other daughter, Ruby, on my own anymore,” Jasmine said.

It’s here she made the decision that the family needed move back to Melbourne to be near family, and it was also then she was put in touch with Very Special Kids.

Alicia was born with Trisomy 18, or Edwards’ syndrome, a condition that’s usually detected in utero, but it wasn’t picked up this time until after she was born.

It’s also a condition that, Jasmine said, was day-by-day of not knowing if she would die. “I basically spent the first few months waiting for her to die, and when she didn’t, I decided it was time we just lived and carried on with life,” Jasmine said.

Jasmine had heard of Very Special Kids because of the Piggy Bank Appeal but wasn’t 100 per cent sure what it was they did exactly.

Little did she know the ‘pink pig charity’ was about to change her life.

“I was pregnant with my third child, Carter, and Alicia was almost two and we booked in for respite at the hospice. I was nervous about leaving Alicia because I’d never left her before, so Ruby and I stayed in the hospice as well but in another room. It was like I could breathe again. I slept all night for the first time in years and when I woke up both Alicia and Ruby were being looked after, they had been fed breakfast and were happy playing with the nurses and carers.”

“It was just a major relief that there was someone else who could take care of Alicia. It wasn’t a hospital, there was no poking and prodding of needles, it was just so warm and caring,” Jasmine said.

Jasmine booked into the hospice again following the birth of her son, Carter, so she could get extra help with Alicia while she recouped. The entire family were also connected to Family Support Practitioner, Heidi, for emotional and counselling support.

Very Special Kids Family Support Team provides the entire family, including siblings and grandparents, with emotional support at any time they need it. Heidi would soon become an instrumental support as Alicia was admitted to the hospice for end-of-life care.

“There’s no way I could’ve coped with her dying at home. I would not have known what to do and I would’ve blamed myself if something went wrong,” Jasmine said.

The family were able to stay onsite in the family accommodation, located next to the hospice, while Alicia was cared for by a team of nurses and Chief Medical Officer, Dr Bronwyn Sacks.

Alicia died just after midnight surrounded by her mum and dad.

“For the first week, I was in so much shock and wasn’t in the right head space to make decisions. But Heidi took control of everything, she had conversations on my behalf, organised the funeral, checked in on us, including Ruby – it just allowed me to just be with Alicia,” Jasmine said.

Today, Jasmine can’t speak highly enough of Very Special Kids and the role they’ve played in the years since Alicia died.

“The camps they provide are the best thing ever. Ruby has made so many friends through them, and she has really come out of her shell. The activities they put on for me as a mum  also allowed me to heal and find new ways to keep Alicia’s memory alive. I’m connected to people who get it and understand, I never stop talking about Alicia, she’s still very much apart of my family, and for my kids to talk about Alicia in the present is a huge mum win for me,” Jasmine said.

When asked if she would support Very Special Kids up-coming Giving Day, she jumped at the chance.

“I love teaching and I think talking about Alicia’s condition and our experience is so important to the education of medical professionals and the community. If I don’t talk about it, how will others learn,” Jasmine said.