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Emma’s story
February 10, 2025
Emma’s world is full of all the things most eight-year-old girls love – a Frozen-themed bedroom, Disney movies, the swimming pool and even wrestling games with her older brother Matty.
Emma is also non-verbal and requires the support of a wheelchair to get around, she shows joy for her many passions through her contagious happiness and cheeky and loving nature.
What started as routine checks after Emma’s birth quickly turned into a series of diagnoses that turned the young family’s lives upside down.
Emma was born with a deletion of a chromosome, which has resulted in extensive medical conditions, including microcephaly, a neonatal condition where the brain is much smaller than other infants. She also has epilepsy, cerebral palsy, hearing and vision impairment, scoliosis and several different physical and developmental challenges.
Doctors declared Emma terminally ill at just three months old.
Emma’s mum and dad, Ashley and Brad, quickly connected with an excellent medical team and soon discovered the ongoing support and respite care available to children with life-limiting illnesses in Victoria.
As part of Very Special Kids support services, Emma and her family receive dedicated counselling and emotional support sessions, which Ashley describes as a ‘godsend’.
Even in our darkest hours when everything just seems so dire, you have someone to talk to and be open and honest with how you’re feeling, they make it clear there’s no wrong feelings with what we are going through.
In addition to counselling support, Emma and her family have access to dedicated respite care at Very Special Kids House
The family live in a tight-knit rural community in central Victoria, which has many perks – Emma is well-known and many people go out of their way to make Emma feel special, wanted and part of the community. However, it also means some challenges when accessing specialised medical care.
With the help of the Very Special Kids’ Road to Respite van, Emma can be picked up and dropped off when she stays at Very Special Kids House.
“I love how they have someone sitting in the back with her and they read to her and sing to her and talk to her…It’s nice to know that she’s very well taken care of in the van and even more so at Very Special Kids House.”
During her respite visits to Very Special Kids House, Emma’s favourite activities are using the hydrotherapy pool, participating in music and art therapy and sensory activities like finger painting.
The hospice also became a vital pillar of support when Emma ticked off the exciting new milestone of becoming a big sister to baby Mia. Ashley shares that Emma absolutely adores cuddles with her little sister.
Emma’s family love to call Emma every night while she’s at respite and read stories to her to say goodnight.
Ashley shares, “It’s an amazing place, the hospice… that’s why we call it Em’s holiday because these people are there to make sure she’s having a great time 24/7… She gets to make new friends and meet more kids like her.”
When Emma is in respite, it also gives her siblings Matty and Mia much-needed quality time with their mum and dad – although Ashley claims that “Matty hates it when she goes to respite because he misses her”.
Ashley explains that Matty is a kind and doting brother, but Emma’s condition impacts him, which is why access to programs like Very Special Kids sibling days are so important.
Ashley reflects, “It’s beautiful the fact that he’s got that support as well as Emma because most places you go, they’re focused on Emma because she’s the one actually physically going through this.”
Matty had a fantastic time attending his first sibling support day, “he realised that there are all these other kids that are in the same boat as he is, and he’s still learning to talk to them and open up to them, but he’s getting there slowly but surely.”
Being involved with Very Special Kids also allows Ashley to connect with other parents, “it’s great talking to other parents who understand what we are going through”.
Ashley explains, “I think a lot of people don’t realise that it’s not a bad life. It’s still a beautiful life and she’s still happy. We get this opportunity to spend her life with her. We get this opportunity to love her. Not many people get this. And while it is stressful, it is emotional. It is hard. It is so worthwhile and it is so meaningful and so fulfilling.”
“There’s no words to describe how thankful we are towards Very Special Kids and what they’ve done for our family. It’s a break for us. It’s a break for Matty and Mia. It’s a break for Emma.”
