Based on an interview with Erin, Lilly’s Mum (NSW, September 2025)

Dave and Erin met when Erin was 17 and Dave was 20. They always wanted a big family and talked about having 4 children. Over time, that dream became reality and they now have 4 amazing daughters. 

Their first child, Lilly, was diagnosed with Tuberous Sclerosis Complex (TSC) before she was even born. At 31 weeks pregnant, Erin experienced severe cramping and an ultrasound revealed cardiac rhabdomyomas covering 98% of Lilly’s heart and she was diagnosed with TSC. Despite this, Erin carried to term, and Lilly was born at Westmead Hospital before being transferred to the Sydney Children’s Hospital.

From just 9 weeks of age, Lilly began having seizures. Doctors warned Erin and Dave that her outlook was uncertain and that she might not do well. Over the years, the family has tried many medications in an effort to control Lilly’s seizures, but the journey has been relentless. The family found some relief when Lilly started the ketogenic diet at age 2. This diet brought an 18 month period free from seizures, during which Lilly’s development progressed. She was talking, happy, and life started to feel more normal.

Unfortunately, Lilly later began refusing food, which led to significant weight loss. The ketogenic diet had to be stopped, and the seizures returned. This setback was devastating for the family. Lilly experienced frequent seizures, sometimes up to 10 a day – even while at preschool and school. She suffered broken bones from falls during seizures and required many emergency hospital visits.

During the COVID-19 pandemic, Lilly had a period of relative stability, but then she went into status epilepticus, a prolonged seizure condition that required a 5 week hospital stay, including being placed in an induced coma. At that time, Erin was also caring for her 10 day old newborn baby. The ketogenic diet was reintroduced in hospital, which helped bring Lilly out of status epilepticus as all medications had failed. Lilly was given a PEG feeding tube and later had a Vagus Nerve Stimulator (VNS) implanted. The VNS has helped stabilize her baseline condition, often interrupting seizures before they worsen. However, she still experiences status epilepticus once or twice a year. 

In January 2024, Lily was again admitted to hospital with status epilepticus. During this same period, Dave suffered a serious accident that left him hospitalised for 3 months, compounding an already overwhelming situation for the family.

People say we’re so strong for her, but really, it’s the other way around. Lilly is the strong one. She keeps us going.

Lilly is now 12 years old and averages 2 to 3 seizures daily. They usually happen between 5 and 9 am, so Erin wakes early to monitor her. Because her seizures come without warning, Lilly wears a seizure helmet at all times, and the family has seizure-proofed their home. The family enrolled in a CBD oil trial at Sydney Children’s Hospital to help with the seizures, but it had minimal effect.

Lilly was initially diagnosed with a mild, and then later a moderate intellectual disability.

Despite the challenges, Lilly lives a fun and fulfilling life. She attends a special needs school where she enjoys swimming, athletics, sailing and music. She was recently recognised with an award for “The Greatest Academic Growth,” a proud milestone for her and her family. She also takes part in a school holiday program with her peers, which she absolutely loves. Lilly is a busy and active girl who finds joy in her daily activities.

Lilly’s 3 younger sisters, Layla (10), Lola (7) and Lara (almost 4), have embraced important roles in the family. Though Lilly is the oldest, Layla and Lola act as her protectors and companions. They are playful and inventive, always thinking of games Lilly will enjoy. Their experiences with Lilly have taught them empathy and kindness. Both girls have won citizenship awards at school, and Layla has given a speech on disability to help educate her peers. The sisters are so proud of Lilly and love and protect her fiercely.

The family’s extended support network has been vital. Erin’s parents have become like second parents to the children, offering steady love and practical help. Erin’s siblings are also close, creating a strong, united family environment. Lilly has united the whole family in a way they didn’t expect. Even neighbours pitch in when needed, such as looking after the other children during emergencies.  As Erin says, “Lilly brings everyone together.”

When reflecting on their journey, Erin says the early days were overwhelming – pure survival mode, dealing with hospital visits, seizures, and also severe postnatal depression. In the early days of Lilly’s TSC diagnosis the family relied heavily on support from the TSC Clinic at Sydney Children’s Hospital, which was a lifeline. The hospital staff at Sydney Children’s, especially Dr Denise Chan (Lilly’s neurologist), Erin Beavis (Epilepsy Clinical Nurse Consultant) and all the nursing staff on C2 South Ward have continued to be a major support for the family during their whole journey.

Erin says that the challenging period during COVID was her lowest point, struggling with carer burnout, PTSD, and anxiety. Since then, she has learned the importance of asking for help. Now, a carer stays with Lilly for 2 hours each day, giving Erin much-needed time to focus on her other daughters and herself.

Erin also reflects on the strength Lilly has brought to their family. “People say we’re so strong for her, but really, it’s the other way around. Lilly is the strong one. She keeps us going. Lilly’s joyful spirit shines through.” Even during tough hospital stays, surrounded by tubes and equipment, Erin is amazed at how Lilly simply gets on with it. “There’s no malice in her. She doesn’t understand being mean. She finds joy in the simplest things. She loves balloons – so we get her a whole stack, and she’s in heaven.” 

The family tries to live as normally as possible. When they want to go away, they plan carefully and don’t let TSC stop them. Erin says, “If we make it through today and had a good day, then what a fabulous day. We take things one day at a time. There are no guarantees with anyone. We are a strong family and are always there for one another no matter what.”

Erin encourages other families facing similar challenges to keep hope alive, take professional advice with perspective, and find support groups to avoid isolation. “This disease doesn’t define Lilly,” she says. “She’s Lilly, not her diagnosis. Just like someone might have green eyes, Lilly has TSC.”