Louis's life list

Twenty-month-old Louis's parents, Amy and James, have one goal for their little boy – for him to live the “biggest and best life” possible. 

Louis was born with Krabbe Disease, a devastating and life-limiting metabolic disorder where harmful amounts of lipids build up in the cells and tissues in the body and destroy brain cells. 

The condition initially doesn’t show any signs or symptoms, making it difficult to diagnose at birth, but over the first year of life, a child’s development begins to regress. 

“Louis was born perfectly healthy. He was a very happy expressive baby and always loved to be out and about, he loves an adventure and experiences,” James said. 

“But at nine months old, we noticed he was starting to regress in his ability to sit and his gross motor skills. Louis also became very irritable and was no longer the happy baby we were used to.” 

“Louis began to experience muscle spasms, he was no longer able to be put down, use the baby bath or car seat, was constantly needing to be held and his sleep was severely impacted, as was ours."

"The unknown of what was happening to our son was terrifying.”  

After presenting to their local paediatrician, Louis was admitted to Sydney Children’s Hospital, Randwick where he underwent several tests to determine the cause of his symptoms. Soon after, James and Amy were given the news that their son had a life-limiting condition. 

“It was heartbreaking and devastating to learn our first child would likely only live until two or three years of age – if that,” Amy said. 

Rather than be consumed by the negative, Amy and James decided to make the best of their situation and created Louis’s Life List. 

"Initially the grief and sadness were overwhelming, however, we decided to try and focus on the positives, especially because we still had Louis and time to spend with him,” James said.  

“So, we started developing the list to give Louis the best and biggest short life we possibly could – and to create life-long memories with and of our son.” 

The list includes experiences like visiting Sea World, seeing The Wiggles in concert and an incredible trip to the Formula 1 Australian Grand Prix in Melbourne, but it also includes memory making at Bear Cottage – a place that has become like a second home, and second family, for Louis. 

“We first visited Bear Cottage in early March this year. On arrival it was a little overwhelming realising the reality of Louis’s and our future,” Amy said. 

“The first night was hard, it really hit us, and we kept to ourselves, but in the morning, we opened up, and everyone was so kind and welcoming that we quickly felt right at home and part of the Bear Cottage family.” 
 

While at Bear Cottage, all of Louis’s medical needs are taken care of, nurses look after his medication and feeds, allied health teams help with his therapy and play time and volunteers are available to help Amy and James relax.  

“Bear Cottage is just so wonderful because you are surrounded by people who understand your situation, both the staff and other families,” James said. 

“We, as parents, don’t get much time alone together but a stay at Bear Cottage gives us a chance to do that while knowing Louis is safe and cared for, 24 hours a day, seven days a week.” 

“It allows a rare break, in what has become a mentally draining life situation.” 

Since visiting Bear Cottage, Amy and James have also been able to tick a lot of experiences off Louis’s Life List.  

“While staying at Bear Cottage, we have had amazing days out with Louis. We've been to Taronga Zoo, Sydney Tower and Museum of Sydney via the Sydney Harbour Ferries, North Head lookout, and local Shelly Beach,” James said.  
 

“We’ve also met superheroes at the Superhero Party where Louis dressed up as Super Saiyan Goku and received his bravery medal, played on a jumping castle, went on the teacup ride, met some cute animals at the petting zoo and danced with his Mummy when the music started. It was amazing.” 

Amy and James have been able to tick some items off their list too, with James attending the Dad’s Support Weekend for some fun activities and Amy attending the Mum’s Retreat, where she was able to enjoy four days of events and pampering.  

“The events have been hugely beneficial for us mentally and we have made some wonderful new friends while getting a break from the reality of our family’s situation,” Amy said. 

Throughout Louis’s life, Amy and James are confident Bear Cottage will remain an important and special part of their family and are endlessly grateful for the support they’ve been able to receive and the eternal memories they’ve been able to create with their little hero.  

Saturday, 14 October is World Hospice and Palliative Care Day – a day where we celebrate the support hospices provide. As the only children’s hospice in NSW, Bear Cottage is privileged to care and support many families like Louis’s during their time of need and provide a place where life is truly for living.