THE BEAUTIFUL LEGACY OF FRANKIE SKYE FOULKES 

With so much turmoil in the world, sometimes it takes being part of a Humpty event to remind you of the good in people, and the kindness they show to others. We had such an experience at The Great Humpty Ball, Darwin held on the majestic palm tree dotted shoreline of Mindil Beach Casino Resort in June 2024. 

I shared the story of Karine and Rob Foulkes and their darling baby Frankie Skye Foulkes. It wasn’t an easy story to tell – if I’m being honest. It was heartbreaking, but a story that is indictive of a territory as large as the Northern Territory (NT). Where infant mortality rates are three times any other state or territory in the country, and waitlists for specialists can often be longer than 12 months. Based in Darwin, where Rob serves in the Australian Defence Forces and Karine works for NT Health, they were thrilled to discover they were to become parents. The pregnancy was tough, they’d had some concerns throughout it, and the birth was not without its complications. 

But on 24 December 2022, their Christmas gift of a gorgeous baby girl arrived early. With low blood sugar they spent her first week in the Neonatal Intensive Care Unit (NICU) before she was given a clean bill of health and was sent home. 

Having travelled all over Australia with the Army, they soon found themselves crisscrossing the country with Frankie - introducing her to family and friends. Frankie would beam and chortle at anyone who caught her eye. She was an incredibly happy and content little baby. 

But call it a mother’s instinct, or the fact that Karine was with Frankie day in day out, she started to become concerned about some of her development. Many times, she turned up at the emergency unit, only to be reassured that everything was ok, and that she was just being a little over cautious as a new mum. She was put on a 12-month waitlist to see a paediatrician.

But Karine could see Frankie was unable to hold her head up for any length of time, and couldn’t hold her legs in the frog position, so she kept asking questions. The more she asked, the more frustrated she became. 

Eventually, through Veteran Medical Group, Dr Chris McLean, who also happened to be a Hospital Emergency Registrar, was able to see Karine and Frankie in their own home in April last year, and was able to observe Frankie for over an hour. He recognised that Karine’s concerns were right, and that Frankie needed assistance immediately. 

They were rushed to hospital, and not long after, a decision was made to relocate their family to the Royal Children’s Hospital in Melbourne. Almost straight away – Frankie was diagnosed with Spinal Muscular Atrophy 1, a neuro condition that affects the nerves that control muscle movement.

By this stage, the muscles in Frankies throat and chest were starting to fail. Frankie was struggling to breathe. Treatment began immediately and Frankie fought hard. 

For 18 days - she defied the odds – before passing away on the 8 May 2023. Aged – just 4 months.

Understandably, Karine raged. She demanded answers. She cried and screamed and shouted and was almost completely lost and overwhelmed in her grief and fury. Until one day, she realised anger was only going to get her so far. That she didn’t want anyone who heard about Frankie's story to automatically think of something negative. 

Instead – she wanted them to hear Frankie’s name - and think of something truly beautiful. Something special, and gorgeous! Just like their baby girl was. 

So instead, she decided to try and funnel all that devastation, confusion, disappointment and grief - into a positive. 

She wanted to help other families who might find themselves in a position where they had a drastically ill baby, and to make sure the right support, and lifesaving equipment would be available for them if they ever found themselves in similar horrendous circumstances.

Mostly, she wanted Frankie to have a legacy that will help others.

So – she found Humpty, and she picked out a piece of equipment. An Arctic Sun Temperature Management System for the NICU in Royal Darwin Hospital.

For many months, Karine raffled off meat trays, made money boards, and collected donations – spending every moment she could between work to raise money to be able to buy a piece of equipment that will proudly bear the name Frankie Skye Foulkes. By herself she raised a remarkable $20,000. But the piece of equipment cost $55,000. 

So, I put it to the room to see if we could help Karine and Rob’s dream come true. And those big-hearted Territorians, and one NSW donor didn’t let me down. The bids just kept on coming. By the end of the night, we’d surpassed the extra $35,000 we were hoping to raise. 

Instead we ended up with over $92,000 in pledges so Karine and Rob will now be able to have several pieces of equipment in Royal Darwin Hospital that will pay tribute to their much loved baby girl. 

To witness, such an outpouring of compassion, generosity and support in the room that night was something I won’t forget for a very long time. And as for Karine and Rob, well, apart from enjoying getting their Saturday nights back together and planning for the future, they also recently enjoyed a visit to the hospital to see the legacy of Frankie Skye Foulkes in situ. It was an incredibly proud, emotional and healing moment that a lot of people can feel proud of and a part of.