Supporting the Long Family in Honour of Hope Brooke Long

On 30th May 2025, our hearts were shattered when beautiful 7-year-old Hope Long passed away. After a lifelong battle with complex medical conditions, Hope’s journey came to an end surrounded by love—but far too soon.

Hope was more than her diagnosis. She was a fighter, a bright spark, a brave soul who defied odds daily and touched everyone she met. Despite spending most of her early life in hospital, Hope faced every day with courage and resilience.

Hope was lovingly supported every step of the way by her parents, Kirby and Dave, along with her older brother, Jye – and extended family network including her loving Grandparents, Aunties – the list goes on. Recently, the Long family moved to Wallaroo, South Australia, allowing Hope to enjoy the beautiful beach lifestyle—feeling the sand and water, and creating many cherished, lasting memories including attending the Wiggles in Adelaide. The move brought her closer to her healthcare team at WCH and her second home, PICU, where she received the very best medical care.

Hope was a true fighter, facing each day with strength and resilience. The family’s decision to relocate was driven by a desire to ensure she had better access to the ongoing support she needed to thrive, rather than economic hardship. She was surrounded by a dedicated team, but her family’s unwavering love and commitment remained her greatest source of strength. Her medical team described her recent growth and development as thriving —but tragically, her body was exhausted. Hope inspired everyone around her. Her name says it all—she gave hope, even in her most difficult moments.

Hope Brooke Long’s Medical Journey: Just a Brief Summary of all Hope encountered!

Hope Brooke Long was born prematurely on November 4, 2017, in Melbourne at 33 weeks and 4 days, weighing only 1200 grams. She was diagnosed with Truncus Arteriosus, Interrupted Aortic Arch Types 4 and 6, and 22q11.2 Deletion Syndrome. At just 1 week old, she caught a staph infection, which delayed her first open heart surgery. Despite difficult circumstances, Hope survived and underwent her first open heart surgery, proving many doctors wrong. Her family recalls being told she would be in hospital for 6 months to 2 years; she had multiple surgeries and was very sick in her early months. Her fragile health led to many prolonged hospital stays.

At six months old, she had a life-saving tracheostomy and underwent a second heart surgery, facing complications that required additional procedures and prolonged hospital stays with critical medical needs (the family recalls 249 days in the Women’s and Children’s Hospital alone). Her family eventually relocated to Port Augusta after extensive hospital stays, continuing her care with local support. Amidst all the challenges and upheaval, they faced the distressing discovery that their home had been broken into, adding to the hardships they were already navigating whilst living away.

Throughout her early years, Hope remained dependent on PEG feeds. At the age of 2.5 Years (March 2020), Hope weighed approximately 12 kg. She was on a strict regimen of PEG feeds, receiving around 6-7 bolus feeds daily of about 190mls, plus overnight feeds of 500mls via pump. She was finally allowed a 5-hour break from her PEG feeding, with 5ml water flushes to keep her PEG healthy. Her family celebrated her growth and progress amid ongoing health challenges, having survived against odds that initially gave her only a 30-45% chance of living. Hope loved outside activities and her simple learning programs on YouTube, and her health was slowly improving. Hope continued to grow, learn, and develop skills, including signing, recognizing people, and engaging in outdoor activities. In July 2020 Hope was hospitalized again, marking another difficult chapter in her journey.

At age 3 Years and 8 Months (July 4, 2021) Hope celebrated her 3 years and 8 months milestone, expressing that she had proved many people wrong, having survived multiple surgeries and complications. By this age, she was signing and using her PODD book to communicate, and she still did not eat orally but hoped to try soon. She was excited about starting kindergarten, looking forward to socializing and learning. Her family highlighted her growth, resilience, and her love for her brother Jye, and expressed hope for her future schooling.

In November 2022, Hope turned 5 years old. She loved outdoor activities and was excited about starting School in Port Augusta. She had undergone her third heart surgery after nearly losing her at 6 months due to Rhinovirus and an allergic reaction. She was mostly managing with bolus feeds (around 6-7 per day, at 190mls), and was starting to respond more by answering questions, signing, and saying a few words. She loved outdoor activities. Family support remained vital, with her parents, brother, and carers all dedicated to her well-being.

In Early 2024 Hope and her family made a big move to Wallaroo. In May 2024 - Hope started at her new school at Kadina Memorial School, initially nervous but quickly adapting, making friends, and enjoying her learning environment. Hope was hospitalized in July with a near-fatal incident requiring further medical intervention and a flight to Adelaide by Helicopter (along side Dad, Dave). Whilst staying in her second home in PICU at Womens and Children’s Hposptial, Hope received diagnoses of Graves’ Disease and with trigeminal seizures caused by her overactive thyroid.She spend 3-weeks in hospital recovering. She begun further treatment for her Thyroid and begun gaining more weight. On her return to Wallaroo, her attendance at school improved, and she made significant progress in communication and confidence. Hope’s Christmas was quiet at home with just the four of her family, which was a change but a special moment. They celebrated New Years by watching fireworks and were hopeful for a positive 2025. Hopes family had also met new people in Wallaroo and joined new groups to enjoy in the coming year.

In 2025, Hope continued her schooling at Kadina Memorial School with progress and the arrival of two trained support workers for her at home, ensuring she was well-supported for her education and daily needs. Hope also attended her very first concert along side her beautiful mother, Kirby and grandmother and Aunt – wearing her new wiggles t-shirt from that her other Aunt purchased for the event (March 2025). Hope was gaining more weight, thriving and enjoying her new surroundings. She loved seeing her local beach in Wallaroo, was introduced to ‘Office Beach’ and loved Bluey, her ipad and family. Hope’s attendance improved with three weeks at school despite episodes of illness. She showed incredible progress—she matched animals from a book with her iPad, demonstrating her developing skills. She was displaying increased confidence and independently colouring. Hope’s thyroid remained slightly elevated, and her medication dosage was adjusted. Her Graves’ Disease was deemed part of her 22q11.2 deletion syndrome. Her seizures, related to her thyroid issues, were stated as trigeminal seizures caused by her overactive thyroid. Brain scans showed no signs of epilepsy, which was a relief for her family. Efforts were underway to wean her off seizure medication earlier than planned, and further assessments planned to continue into June. A referral for an assessment for Autism was underway.

Despite all the progress Hope made, she suddenly fell critically ill. On Thursday, May 29th, she was transferred to Wallaroo Hospital and then flown out late that night to Adelaide. Her family stayed by her side, and her dad, Dave, accompanied her in the helicopter. It was an overwhelming and heartbreaking moment— The medical staff explained that while PICU had always been able to help Hope recover from previous crises, this time was different. They honestly told her family that this issue was beyond what PICU could fix, and that she was not expected to come off life support. Sadly, Hope peacefully passed away at 4:16 pm on May 30th, 2025, in her second home—the PICU at Women’s and Children’s Hospital. Her body fought fiercely right until the very end, never giving up hope—just like her name. Hope’s journey touched the lives of many, and her strength and love will forever inspire us all.

Why We’re Asking for Help

The Long family has been living under extraordinary pressure. Both parents have been full-time carers for Hope, unable to work due to her complex care needs and their own health challenges. Kirby lives with the same rare genetic disorder as Hope and faces her own physical limitations. Dave, while devoted to his family, has not been able to work for years due to his caring responsibilities and is a constant source of support for the family.

It’s important to acknowledge that the Long family rarely, if ever, ask for help—they are incredibly family-focused and resilient, often putting others before themselves. Right now, however, they are in need of support, and this appeal is made on their behalf, with their permission, because they still wouldn’t ask for help outright.

No parent should have to grieve their child while also worrying about how to pay for food or keep a roof over their heads. Their strength and love for Hope have been extraordinary, and now, with this support, we hope to help ease some of the burden they are carrying.

How You Can Help

We are raising funding to help with:

• Funeral and memorial expenses

• Support for Kirby, Dave, and Jye as they grieve

If you are able to donate, no amount is too small. And if you can’t donate, please consider sharing this campaign with your network.

This is a family who has given everything they had for their daughter. Let’s come together to hold them up when they need it most.

Thank you for your love, support, and kindness. Hope’s life was short, but her impact was immense. Let’s honor her memory by helping the family who loved her fiercely.

With love and in memory of beautiful, ever-smiling Hope – and on behalf of the Long Family,

From Team Hope xxx