Poppy's story

Seven-year-old Poppy loves everything that most other kids her age love. Sheloves Disney, dressing up, playing with her friends at school and little brother Sonny at home, and playing with her favourite thing in the world, her teddy “Bear”.

She also loves football and attending the “Go Cats” home games.  One of the highlights of her life so far was running through the banner of an AFLW game to help celebrate her Aunty Lily’s 50^th game with the Melbourne Football Club.

However, unlike other kids her age, Poppy has spent countless days in hospital over the last seven years .

Poppy has a genetic condition called Phelan McDermid Syndrome (PMS) which is caused by an mis sequence or deletion in the 13th arm of the 22nd chromosome.

The medical and behavioural symptoms of PMS can be significant. For Poppy, it means she has a learning disability, delayed speech, reoccurring autoimmune encephalitis, seizures, insomnia, and cyclical vomiting.

This has led to Poppy spending many weeks in hospital over the course of her life, with her longest admission being May in 2024 for five weeks.

Since Poppy was about 18 months old, her parents knew she wasn’t developing typically. She wasn’t speaking at all, began to walk late and had already spent four months in and out of University Hospital Geelong with unexplained cyclical vomiting.

From ages one through to six years, Poppy’s health would ebb and flow with these vomiting episodes, leading to hospital stays ranging from 3-10 days, which were initially assumed to be due to her coeliac disease (gastrointestinal problems common in PMS). However, last May, she became very unwell with prolonged seizures and needed to be intubated and kept in the Intensive Care Unit (ICU) at University Hospital Geelong for approximately one week before being moved to the Royal Children’s Hospital (RCH).

One of the paediatricians in Geelong was the first to suggest a unifying cause for all of Poppy’s health concerns over the years. At RCH they fast tracked the genetic testing which came back with her PMS diagnosis. Poppy’s mum Sarah said it made a huge difference knowing that there was a diagnosis.

“It was such a relief having the answer to all our questions. We knew it was going to be a long road ahead and that life would not be simple. But it didn’t change the Poppy we know and adore, her diagnosis just gave us the key to being able to be the best parents we could be for her. It meant we could learn and understand her better than we ever could before,” Sarah said.

“The new Barwon Women’s and Children’s will be life changing for families like ours. To have the very best care in the best facilities, without having to drive up to Melbourne will be amazing. Long hospital admissions challenge families and parents more than you can imagine, especially when there are other siblings. So being in larger more comfortable spaces, close to home, will be amazing.”

In July, Poppy and her family met the builders, Built,  who will oversee the main construction of the Barwon Women’s and Children’s  to hear what the project will mean for families like theirs.

BUILT Health Sector Lead Monica Fontaine said having local builders and contractors is a priority for the project,

“Many of our team have had personal experiences with Barwon Health and live locally, so this project is really important to them as they know the difference it will make to families like their own and to kids like Poppy,” Monica  said.

Poppy’s Mum Sarah was excited to hear about the project firsthand knowing the impact it will have on their family,

“We were excited to meet the builder and hear about the project because these facilities and services are so important and can be life changing for not only patients but families as a whole. We want people to share our story so people can really understand the importance of having the right specialists/teams/resources in a growing place like Geelong, for children like Poppy,” she said.

“The future is a bit uncertain for Poppy. Our hope for her is that she continues to learn skills and can find her passions as she grows. She will always need help and support, and most likely medical attention. But if she is happy doing what she loves, whatever that may be, we will be so happy,” Sarah added.

Main construction on the Barwon Women’s and Children’s is on track to start in late 2024.