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.
The Bede Update 
Sending much love to you and all those who were touched by Bede’s light
Dearest Isabella sending you all heartfelt condolences love and understanding on the loss of your gorgeous courageous mighty Bede. I will never forget the first day we saw you. Matthew thought he was the cutest baby he had ever seen. No words 💛💛💛 Shelley Steve Carulli
Sending much love to you and your family. Our giant babies were born weeks apart and I have followed Bede’s story all the way. You gave Bede a wonderful life, full of love and keep a lifetime of memories to cherish. Xx
Dear sweet Bede we have been apart of your life before you were born in an amazing mothers DIG I have been dreading this news so very much, Eli (your DIG brother) and i are saddened to hear this but are happy that Love won and that ther ewill be no more pain xx
“Only when you drink from the river of silence shall you indeed sing.
And when you have reached the mountain top, then you shall begin to climb.
And when the earth shall claim your limbs, then shall you truly dance.” x much love
Dearest Isabella, Roy, Gus and Cress.
My heartfelt and deepest sympathy to you all on hearing of your beloved Bede’s passing.
I have followed your blog from early on – Following Bede’s journey through Isabella’s beautiful words. Raw at times and joyous at others. Awaiting your next post and hoping that Bede was well.
My heart is now heavy with sadness for a little boy I never knew, but greatful to hear that his passing was not prolonged or too painful.
Sending you all strength, light and love for the coming minutes, hours, days, months and years.
Bede has a very special place in my heart and for many in Team Bede who were not fortunate to have crossed paths with him. Love conquers all! Xxx
Oh Bede. Your light will be shining up high in the stars.
God bless you little man i will keep you in my prayers….R.I.P fly high 😢
Love and condolences to you all.
Bede was a special boy❤️😘
So sorry to read this – my deepest sympathy to Bede’s family xx
Never met you but have followed this miraculous journey from the beginning. Bede has always been in my heart and always waiting to hear about his next milestone or about him defying modern medicine again! My heart breaks for you all and at the same time Bede inspires us to take life by the balls and live despite what life throws at us. I will always remember this amazing stong little boy! With much love Josy xxxx
Oh beautiful beautiful boy. So many of us who never saw your beautiful face in the real world or heard your laugh or felt your gentle hands are filled with love for you and have been changed for the better watching your determination, love and pure joy at life. Isabella, thank you for sharing Bede with us all in this way. We are blessed to have taken this journey with you all. Sending love and strength to you all. Shine bright little man. xxx
Bede what a legend, what a fighter and what a great giver of love you have been. You did what many said you couldn’t. You constantly gave us miracles, hope and sunshine. It is so hard to say goodbye to you… Issy, Roy, Gus, Cress, Mary-Ellen – we are sending you hugs and courage in the days to follow this. I hope that knowing that Bede is light and love and in the arms of some bigger force will give you comfort. What great and fierce Angels wings he will be given – our small but mighty Bede – we shall love you always. Claudia and family x
Dearest Isabella and her beloved family,
Word can not express my sorrow. Beautiful Bede, rest in peace. Your beautiful, strong and mighty personality will always be remembered.
Sending love always
Zoe and family xx
Beautiful, beautiful boy rest gently. My deepest sympathy to Isabella, Roy and family. Hugs.
My most sincere condolences to you all.
Love, light and strength to you all.
May your precious little man rest peacefully x
Love and light to you all xx Rest easy now sweet Bede ❤
RIP, Bede. You have left a huge mark on the people around you.
No words will ever be enough in this situation.
Thankyou for sharing Bedes story and life.
May his light shine bright and his smile forever brighter.
xx
My thoughts, love and peace to your amazing family Bede, and to all of your wonderful friends who loved you so very much x
RIP Bede
Heartfelt sympathy to you all.
Love Mary & Peter xx
Go with peace and light Bede. Thank you for lighting up the world. With much love to all your family and Bede’s huge support base. Love the Andersons
Beautifully expressed, as ever. Your beautiful Bede has left imprints on strangers, people who he never met – what a star indeed. Love to the whole family. Gabi Mills
Dearest Issy, Roy, Gus and Cress
Our heartfelt condolences to you on your beloved Bede’s passing. May his beautiful inspiring soul now rest, ……Bede’s courage and strength will always be remembered and adored by all who had the pleasure of meeting him.
Love won. .
All our love from Glynn and GaryXX
RIP Bede, your light will shine on. Much love to those you left behind
Fly free Bede your work on earth is done. Your soul is free to run and play now.
Blessings and support to your family. Such strength and positivity drowned in love they showed you .
You will always be around them till you join together another time xxxxxx
Strong to the end RIP little man. Thinking of you all he was always surrounded with love xx
So sorry for your loss. He was strong and he was mighty. Team Bede!
I have been following your beautiful little man for a while now and I’m so so sorry for your loss
Sending your family love and support
Kelly & family
So much love and so much light from such a little human! Bede’s life has been and will always be an inspiration to all of us. We never met him but got to love him so much through your beautiful stories and photos! Stay strong as you have ever been and you will always and forever be in our thoughts.
Ivy and Mommy.
A beautiful boy … with a beautiful family. His love will be felt for all time 💗
A Brave Little warrior
Rest easy little man
Smile down on your loving family as they bear the grief of your passing
A mighty battle well fought
Maz
I have followed bede’s journey from the beginning and what a spirited journey it has been. You must be the proudest mum to have shared bedes life, I’m sure he would never have chosen another 😘 Sending you all so much love and strength
Thank you for sharing Bede’s amazing light with us, my heart and love goes out to you all at this time. My he shine over you all, always. xo
My heart is broken for you; thank you for sharing Bede’s story. What a beautiful little boy, and what a wonderful life you have given him.
Fly high now, little man.
Dearest Isabella, Roy, Gus and Cress,
We have never met but still I was blessed to follow Bede on his journey from the beginning. Although always expected I feared to one day read about his passing and now I simply cannot express my feelings in English.
Lieber Bede, es war so schön zu lesen wie viel Kraft du hattest, wie viel Liebe du empfangen hast und wie viel Freude du geben konntest. Danke dass es dich gab. Ruhe in Frieden.
Damian, Switzerland
Dearest Isabella. We met in PICU when Bede was 1st diagnosed.
How he has touched my heart.
My heart is broken for you and your family.
I wish for you comfort, love, courage and strength.
Anne McLaughlin. xxxx
once again your words have touched my soul.
I hope you and your family find peace
Beautifully written as always and yes your beautiful amazing boy did it his way . He lived and left you all on his terms . Heartbroken here in Scotland for you all . Bede will never be forgotten by all who came to know him loved forever beautiful boy Fly High with the Angels xx
Much love to you all. Bede, you have touched our hearts in many ways. May you now be free and fly high little one
Sending all our love to you. Fly high Bede ❤
A beautiful shining star lighting up the sky. Your light and guidance will envelope your precious loved ones always. RIP Bede and fly high little man.😘🌟
Thank you. Thank you for sharing your lives with us. I have been following for years. Hoping, wishing, riding the ups and downs, and praying. I wish I could truly expain how I feel, being a complete stranger and yet being able to be part of this very personal journey with your family. I am so, so deeply sad right now. Love to you and your family.
Sending love, thoughts and prayers to you all. Bede was an amazing little fellow who has brought much hope and inspiration to us all. May you find comfort in God’s strength and know that Bede will always have a special place in all our hearts. With love. xxx
What a beautiful, courageous boy, clearly so very loved by all his family. May your dear little man rest peacefully xx
Hugs kisses love and thoughts.💞
He chose such a beautiful family to live his life with! Sending you so much love and support for the hole you will be left with. Rest in peace little man! ❤️❤️❤️❤️❤️❤️
Dear issy,Roy, Gus and cres
No words can describe what you are all going through. You have all been in our hearts from bun first introduced us to your amazing family. Bede was such a beautiful amazing and courageous sweet boy and we are so grateful our family got to know him from Scotland! Caleigh and darceigh both prayed for bede and his family last night. You are all in our hearts and thoughts everyday. Sending all our love. 💙🐝 Danielle, Robert caleigh and darceigh xxxxxxxx
So small, so powerful.The power of love and being loved is larger than the night sky, and the impact we make is never measured by the years we live, but the moments we share with others that will cause ripples of Bede’s life to keep resonating for all of us fortunate to have known him. Rest in peace, thinking of you all through my blue colored glasses.
All my love to you Isabella and Roy and family. I have followed Bedes life in awe of him and he has shimmered and defied odds. He will continue to shine his light that has touched so many of us, lighting the dark xxx