Austin was born in 2016.
Austin’s family describe Charlton Farm as a place that gave them precious time together after their son and brother died.
They share how Charlton Farm supported not only Austin but his brothers, Lance and Henry through their grief, and continue to be there for the whole family as they navigate life without him.
Austin’s primary diagnosis was recorded as ‘No overarching diagnosis’, as there was no single condition that explained his complex medical needs. He had difficulty with his immune system and lungs, that required regular treatment to help protect him from infections and was on 24/7 oxygen from 2021 to support his breathing.
Austin’s mum, Zoe and dad, Rich first heard about Charlton Farm through friends and Austin’s Lifetime nurses. At the time, she knew very little about the support a children’s hospice could offer.
Without a diagnosis, and not knowing what the future held for Austin, Zoe and Rich did not think they would meet the requirements for respite care. They now know how much Austin would have loved Charlton Farm and wish they had pushed for support sooner or referred Austin earlier.
Austin was referred to Charlton Farm in January 2024. He sadly died in hospital the following month, age 7. Austin was brought to Charlton Farm, where his family were supported for 5 days, giving them time together in a peaceful and caring environment.
Charlton Farm became somewhere incredibly important to his whole family.
Zoe tells us about this time and how much the support from Charlton Farm meant to her and her family.
“Being able to take him to Charlton Farm instead of going straight to the funeral directors helped us so much. For 5 days, we were able to be together as a family."
They fed us, looked after Lance and Henry and gave us the time and space we needed to grieve.
“The team always made sure there was Disney music playing for Austin, even when we weren’t in the room with him. This meant a lot because life was never quiet for Austin, and he loved his Disney music.”
Austin loved Frozen, Moana, Brave, Tangled, Hercules and Tarzan, and would often act out his favourite Disney films. He adored Spidey and His Amazing Friends and had even given himself his own superhero name: “The Amazing Austin”.
The staff understood that caring for Austin also meant caring for the people who loved him.
The team also helped the family create precious memories that they will treasure forever. From hand casts and hand paintings to a fingerprint tree canvas, they supported the family in creating these special keepsakes together.
Zoe and Rich also remembers a particularly poignant moment that has stayed with the family and means so much to them.
“After 5 days at the hospice, it was time for Austin to leave. Despite the rain, everyone at Charlton Farm took time out of their day to come outside and give Austin a special send-off, blowing bubbles as he left. It was such a beautiful and emotional moment."
Knowing that everyone had taken the time to say goodbye to Austin, even in the rain, is something we will always remember.
Zoe and Rich are forever grateful for the support that their 2 other sons, Lance and Henry, also received.
We were able to grieve knowing that Austin’s brothers had somewhere to go, be supported and spend time playing with the sibling team.
"This support has been particularly important for Lance, as he doesn’t like to talk about his feelings or about losing Austin, even with his family.”
For Austin, life was about being involved and making the most of every moment.
He loved going on adventures with his family around the UK, including visiting Scotland, staying in Premier Inns and going on caravan holidays. His favourite place was Crealy Theme Park, where he would drag his oxygen tank around so he could repeatedly go on his favourite ride, The Maximus.
“He was a bit of a daredevil. His oxygen didn’t stop him living the life we wanted. We made anything possible”, added Zoe.
Austin also loved school, his friends and the staff around him. He took part in swimming, pan-sensory football with both of his brothers and golf at home. He was particularly proud of completing his first full school sports day in Year 1 and receiving his medal and ice lolly.
Austin’s family describe him as a brave, determined and strong-willed boy with a huge personality. Zoe calling him “my little boss”, which always made Austin smile.
The family continue to receive bereavement support from Charlton Farm giving them somewhere to turn at a time when they are navigating something that nobody can prepare you for.
“Nobody really tells you what to expect after losing a child or what support is around for you.”
There is always someone we can talk to here, no matter what.
They feel incredibly fortunate that Charlton Farm became part of their lives when it did.
We are very lucky to be a part of Charlton Farm just before Austin died, to have had that support as well as the continued support we still receive. It is like we have become part of their family.
Austin’s family are taking part in Moonlight Memory Walk, Clevedon to honour their son and brother and to help raise vital funds so that other families can receive the support that has meant so much to them.
They wish they had been able to experience Charlton Farm as a family while Austin was alive, but they know he would have loved it.
Austin’s legacy is also continuing in another important way; after years without a diagnosis, Austin was eventually diagnosed with a newly identified variant or mutation linked to NEMO deficiency syndrome, an extremely rare condition. Specialists are learning from Austin, writing about it, sharing information and helping to keep his memory alive. His story is helping future children and contributing to changes in testing.
For his family, knowing that Austin is still helping others means so much.
He’ll forever be our favourite superhero “The Amazing Austin”
