And so he died as he lived with strength, dignity, grace, shining his light and in the arms of those that loved him the most.
He was signing for ‘more’ and smiling almost until the very end.
Good naturedly defiant, triumphant. He did it his way.
He stayed true… A peaceful protest wrapped in warmth.
Bede was called into hospital last week when, as he smiled and laughed and attended rehab, we got the news his blood sodium was so high it would send a grown man into a coma. He continued to live on his terms. A few days into the admission, despite brain scans showing no acute change, we got the sense it was time to take our boy home. The doctors supported us but were also backing him to turn it around as he had done spectacularly so many times before.
We made it back to his happy place just in time on Tuesday. He died in the early hours of the next morning.
As one of Bede’s long term doctors put it “It almost sounds like the way its meant to be: On his terms, in his time, at his place, with his people.”
12 days ago Bede was making pizza, smiling, attending kindy, hanging with his brother and sister, living the best quality of life we could have ever hoped for. Roy says it feels a bit like he was on a train and simply thought “Yep. This is my stop, time to hop off.” Simple as that. Whatever it was Bede once again outwitted brain cancer to do it his way.
A gentle soul with a cheeky sense of humour. Determined to have the peace he so richly deserved. There was none of the pain or agitation we feared for him. Love won.
There was no raging against the dying of the light.
Just a miraculous boy who shines on into the night.
Bede you remain the wonder that is keeping the stars apart.
I carry your heart with me, We carry you in our hearts.
This news being delivered by blog and social media reflects the incredible number of incredible people that love Bede. It is an overwhelming task to inform you all in a way that does justice to the friendships Bede has cultivated. Please forgive us as we focus on caring for our three children. Details of his service on Wednesday will come in time.
Oh wow Isabella, Roy and family… I have followed the amazing journey of and extraordinary Bede.
My heart and soul goes out to you all – Bede will forever be remembered – a strong, amazing young man
I simply have no words but from one mumma to another you have my heart 💞 and Bede has the worlds 💙
Hi Izzy…sending our love and thoughts to you, Roy, Gus and Cress. Bede showed us how strong love truly is, he is awesome! 🌟🌟🌟😘 Love Leah, Phil, Bianca, Christian and Michael Re
Love thoughts and hugs 💞
I had to come back and re-read this without the tears in my eyes. So much strength you have given to your family Bede, and hope to all those you shined your light on. Although your earthly body will be missed, your amazing brightness will always be with us. As Matty (your buddy) told me this evening; Bede is helping the sun set such pretty colours, so that he can go to bed and rest.
And rest you shall our beautiful Bumble Bede.
The moon has been beaming and Bede’s light still shine.
Be free little one.
Love to you all xx
Rest In Peace Bede we all can learn a lot from you.
Rest easy Bede-you will always be remembered.
Big love to you & the family Is, very sad to hear the news.
Katrina & Reuben xxx
What an incredible journey you have all been on. Bede has inspired so much faith, amazed us all with his resilience, made us laugh and cry. The quality of love and support he has received goes to show what an awesome fella he is and he will always be remembered. Thank you Isabella for sharing your lives with us xx
Sending you lots of love ❤️
Sending love and thoughts your way. What an incredible little boy! We can all learn alot from you, Bede and the family.
Izzy, Roy, Gus and Cress
Bede was such a miraculous little man and his bright spark will live on in everyone who knew him. Your love and determination for Bede was incredible. Thinking of you all.
Sandra, Chris and Georgia x
Thank you for sharing your light with us. Thinking of you all at this time and taking away the lesson that love and light untie and thrive in any circumstance. Such a beautiful boy!
Sweet dreams gorgeous Bede 💙 I have followed your story since the beginning and have watched with admiration as you grew with the love from your family. They say that love conquers all and it truly does. My thoughts are with you all at this time x
I saw this and burst into tears. I looked up and., I wish I could show you a picture of the sky right now. It was like he was saying “it’s ok”. I didn’t know bede but followed his journey on your blog. Just know he touched the hearts of people around the world.
Dear Isabella, Roy, Gus and Cress I understand the pain you will be going through as we lost our son 3 years ago who also had struggles. Henry had a wonderful life as Bede did full of love and family.
I wanted to share something that one of the air ambulance guys said to me as we were leaving our local hospital to be flown to PICU at the Royal Children’s hospital in Melbourne – he stopped me and said “The success of a life isn’t measured by time”. Bede’s life was a success even though his time was short.
My heart ached when I read your post today.
The Angles will led Bede to a place were he will have less struggles and more freedom then he could imagine.
I send you love and strength. Take care of each other. Jess x
Dear Is and family, my thoughts, love and prayers are with you all, your strength just amazes me as did that gorgeous little boy of yours. Heaven has him wrapped up in its arms now and those stars will always shine bright just for Bede. Thinking of you during this emotional time. Brigette and family xxxx
You flew so high and so beautifully, darling boy. The love and dedication of your remarkable family was reflected back to us in your joy, your miraculous development and your gentle defiance of each and every obstacle. You became. You overcame. And now the glow of your sweet, sweet existence will light the path ahead for those who so cherished and adored you. Isabella, Roy, Gus and Cressida, I am so deeply sorry for your loss and so utterly in awe of your Mighty Bede xxxxx
Dear Gus and family,
I’m sorry for your loss, I know that Bede is in a happy place now where he isn’t suffering. I know he was a great brother and a great person to be around. I’m at school is Gus needs anything. Sincerely, Charleston
Sending you many hugs. So in admiration of Bede and his courageous spirit !!!! I hope you know how much he was loved. Look after yourselves in this very sad time and if there is anything The Adventurers can do for you at this time – just name it !!!!
He was an inspiration to many. Peace be with you little man and to your incredible family too 🙏🏻 Clare and co
My heart and love to your amazing family with the strength and caring passion you all have. Bede though I had never met I had I honour through you to love. Your boy was and always will be an amazing example of what family love can do against the odds. I Thankyou for allowing me to be apart of this incredible young boy’s life.
Dear Izzy, Roy, Gus and Cress,
Wishing you peace to bring comfort, courage to face the days ahead and loving memories to forever hold in your hearts.
RIP dear angel Bede. ❤️
Thank you for sharing Bede’s life with us. Sincerely sorry he has left for a higher place of just as much love as you have given him but without the pain he he has endured with the lovely smile on his face. May his dear little soul now rest in peace. He has taught many the lesson of accepting what has been given to endure and given his love back to you in return. Bless you all.
All my love he was a little fighter
Forever the shining light. My love, prayers and thoughts to you Is, Roy, Gus and Cress.
Thank you for sharing Bede with us through this blog and I am so sorry for your loss. Love to you all X
Heartfelt condolences, what an amazing journey Bede had with his even more wonderful family. Thank you so much for sharing Bedes days with us. We felt so much a part of your family. Rest easy little man 😘
I am so sad to read this. His journey has touched all of us. Sending all our love, thoughts and prayers!! ❤🙏💐
My heart goes out to you all!!! Words escape me but my thoughts and prayers are with you all!!xxxx Sleep tight little man xx
Good bye beautiful Bede rest well little man, you were loved by so many. Hugs to your family little one xxx
Thank you for sharing your family’s journey and I’m so very sorry that Bede has succumbed to the terrible disease that is cancer. However the impact that he has had on so many people, including my own family, is profound and will never leave. My thoughts and prayers are with all of you – and as I look into the dark evening sky there is a very, very bright shining star – and I feel it is Bede making his presence felt already. God Bless all of you.
Sending you all love and strength. Fly free beautiful Bede xxx
So sorry for your loss. What a beautiful family you are! Thoughts are with you.
Oh Bede – what a precious boy you are – I have followed this blog for sometime – often praying for you – how lucky heaven is to have you now – you make sure you keep all those angels in line with your infectious smile. Sending love to your whole family. Sar in Perth x
Bede will be held in many hearts as you have shared the story of his life and his amazing strength. You are all amazing, and how wonderful that he passed surrounded by love. May he rest in peace. 💜
What a beautiful soul, another angel to fly high
Isabella. My heart breaks. We we’re on the ward with you last week. My son was also discharged on Tuesday. One evening I passed you as you rushed through the doors with a tear streaked face. I recognised you and wanted to grab you and give you a huge hug, but I’m a perfect stranger. I should have. I’m so sorry I didn’t. May you find peace in the darkness. You’ll be in my thoughts x
Shannon despite appreciating your care I would not have stopped. Nothing, not even a gorgeous hug, could keep me from my boy when he needed me and if I was crying it was with the rush of him needing me and not being there.
Run, cry, pull yourself together, kiss, sing, smile. Almost a ritual.
Thank you x
Sending an enormous amount of love and strength to such an incredible and inspirational family.
I am a stranger who has followed Bede’s amazing story and that boy will be in my thoughts forever.
My heart aches for you as you farewell Perths little hero… I’m sure he will continue to work miracles and watch over you all with such pride.
I admire your strength at a time that would be unbearable to most, you gave Bede the best life until the very end and surrounded him with so much love and light.
Sending sincere condolences to you all.
R.I.P Bede you little champ
Somehow, without having met him, I found myself loving Bede with all my heart. I’m so glad he got you as his family. Thank you for sharing his story. Love and hugs to you all.
Dear Isabella, Roy, Gus, Cress and of course Bede,
We read your news with sadness.
We only met Bede very briefly when our son (Finn) did a surfing course with Gus at Trigg Beach this April.
We were moved, inspired and grateful to have met Bede and your family, albeit briefly. In Bede we saw a child well loved. In you we saw what love and determination can do. Around you we saw the best and most fragile of humanity.
We are thinking of you.
Love and prayers.
Laurie, Loreta and Finn
Isabelle and family, it is heartbreaking to hear this news. The strength, courage and determination of you and your family and most of all, gorgeous Bede, is an inspiration to all. I’m deeply sorry for your loss. Thank you for sharing Bede’s journey – your words are always humble, positive and beautifully written, and I’m so privileged to have been able to follow your journey. Love and best wishes to you and your beautiful family. Silvia xxx
Sending you all my love and strength. I’ll have a word to my beautiful Luke to look after Bede. Two amazing boys that were too good for this world. Sandra xxx
It has been an absolute honour to see the strength of your little boy and your family as I have followed Bede’s story over the years. Your son, and your family, has touched my heart from half way around the world ❤️❤️
Bede’s light lives on, and I will never forget your little boy. Thank you so much for sharing him with us all ❤️❤️❤️
Sending you all my love and strength. Bede will never be forgotten. He has taught us all so much xx
Thank you so much for sharing Bede and your family with us. It has been amazing to be a part of his incredible life and I do appreciate you allowing us to be a part of something so special. I hope you are all doing as well as you can and know there is so much love to cocoon you as long as you need it. Thank you Bede, to you and your amazing family. xx
Isabella, I am deeply sorry for your loss. I am glad Bede passed surrounded by so much love and on his terms. Bede’s story has touched my heart like no other, and through your words I truly believed he would keep defying the odds. I know I am a stranger, but you honestly make me want to be a better mother, and a better person. What an amazing woman you are. My heart goes out to you, Roy and your children. Rest in peace you beautiful boy ❤️😢🌈
Dear Isabella, Roy, Gus and Cress, Bede walked this earth for a very special purpose! He showed us how to connect people with each other through his remarkable journey full of tremendous challenges which were systematically and courageously faced by the admirable strength, determination and love of his parents with whom he will be connected forever by an eternal bond of everlasting love!
Our thoughts and prayers are with you all as well all gather our inner strength to continue to journey through our lives with Bede as an important and unforgettable part of this fabric of life that we weave as we move forward!
I will always remember Bede as the beautiful newborn baby when I first met him on his birth day!
Take care and always look after each other! God loves Bede and his near and dear ones and so do we!
With Lots of Love & Best wishes, Dr Mohan & Team.
Rest in peace beautiful Bede, while most of us never got to experience your amazing strength and ever shinning light in person we did gain a tiny snapshot into your wonderful life. Continue to shine on over your amazing family.
Isabella, Roy and family… our hearts and thoughts are with you always. Thank you for allowing us all into your world, into Bedes world….
Fly high beautiful boy…