A young Seymour local, Emma Thorsen, has been regularly travelling to Victoria’s only children’s hospice, Very Special Kids in Malvern, in Melbourne’s inner south-east, for care.
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Her mother, Ashley Polachek, said Very Special Kids had been a big help for Emma and that they treated others like family.
“Very Special Kids offers not just respite for families, but they offer so much support for our family,” Ms Polachek said.
“We also get a family co-ordinator, who has been with us through thick and thin.”
Alongside yearly respite for Emma’s family and a family co-ordinator being just a phone call away, the family is also offered mental health and wellbeing support from the hospice.
Very Special Kids is a paediatric palliative care facility with a state-of-the-art centre designed as a bright home-away-from-home.
“They do so many things with the children there,” Ms Polachek said.
“They are spoiled there, so I’ve never seen Emma really unhappy while she’s there... ever!”
Emma was born with a condition called Deletion of Chromosome, which resulted in several medical conditions, including microcephaly, a neonatal condition where the brain is much smaller than other infants.
Doctors declared Emma terminally ill three months after birth, and it turned the family’s world upside down.
“We were at a loss for what it meant for us,” she said.
“It was definitely a massive impact on our family.”
That was when she was referred to Very Special Kids.
“Very Special Kids instantly picked her (Emma) up,” Ms Polachek said.
“Since then, they’ve been a part of our family.”
Emma is now seven and about to become an older sister.
Ms Polachek, who is set to give birth on Tuesday, said Emma would be on respite on Monday.
She said there’d been a lot of emotions with this pregnancy as they worried the infant would have the same condition as Emma.
“I got that peace of mind after finding out she (the baby) is healthy,” she said.
“I was a bit of a mess.
“We knew we wanted this baby, but we were terrified it would all happen again.”
On Tuesday, November 21, when Ashley gives birth, the hospice will also open their new Very Special Kids House, which happens to coincide with the hospice’s annual matched giving day fundraiser — A Very Special Day.
Very Special Kids CEO Michael Wasley said the new facility would improve the quality of life for children and young people with life-limiting illnesses and their families – through life, death and grief.
“The clinical needs of children today are significantly more advanced than they were 25 years ago,“ he said.
“Children are living longer with these conditions into adolescence, placing higher needs upon their families as full-time carers.”
Despite having Very Special Kids, Ms Polachek said Emma was living in the best community for her in Seymour.
“The community is generally very welcoming of Emma,” she said.
“The amount of people who come up and stop and talk to Emma, hold her hand and take their time to talk to her.”
“They make an effort to make her feel special, wanted and part of the community.”