Hannah sadly passed away at sunrise on 17th March. Hannah will forever be in our minds and hearts.

The following post was written by her Dad:

In my head I have written this a thousand times but never actually expected to do it.

Our beautiful, gorgeous, brave, little Hannah Bana Bing Bong passed away just after sunrise this morning. She was being held by her Mummy and Daddy and surrounded by family. Her ending was peaceful, comfortable and with the level of dignity she deserved. We read to her, we sang to her, and we talked about all of our happy cherished memories and both had lots of cuddles. She held on for way too long and would not give up despite our heart breaking encouragements for her to peacefully go to sleep and head to her happy place.

I often hear it said that no Parents should ever outlive their children but I don’t fully agree with that today. Nine months ago if you would have given us the chance to take on all of her pain, we would have done it in an instant. In a way it feels like we have done that. If we now bear her pain and she is at peace then we are thankful we could be there and comfort her at the end of her short beautiful life.

We have so many emotions and I’m not sure how we will get through the coming hours, days, weeks, months and years but we will. One small little step at a time. We live in comfort that she has to endure no more ouchies. We promised her it would all be ok and we will make sure it is.

She was so fabulous and so, so loved and we are so, so thankful for the short period of time we had on this world with her. The size of this universe and she was our little girl on this little planet and we’ll always be blessed for that. She was bright, curious about the world, and had an incredibly warm caring heart. She was loved by all who were lucky enough to meet her and she lit up all our lives. She had a thirst for life that often wore us out and a sharp wit that kept us on our toes. Her loving caring nature was no more so apparent than her delight at being a big sister. She loved the job almost as much as she Loved Nora and we are grateful we were the ones who witnessed that. A true Yorkshire Rose.

We are going to miss her all the world.

To our Family and Friends, we cannot thank you enough for being there for us. To everyone who messaged us we read every single one and they both broke us and gave us strength. We have never felt so loved and you wrapped us in a safety blanket and we are so thankful for you all.

She had the absolute best care in the world and there are a million thankyous I need to hand out. I had a talk with her Doctor many months ago and I said the one thing we really needed as a family was, regardless how things turn out, to feel as though we have done all we absolutely could for her. Despite the suddenness of her passing and all the hurdles she faced Johns Hopkins All Children’s Hospital and our friends at Jacksonville Proton Center and all of their staff and volunteers gave us that gift and we will be so forever grateful.

To our new friends we have met on this road we hope the last few days have not been too hard reading on you all. To you guys we would say keep strong, keep moving forward, do all you can, and do not be afraid. We are rooting for all of you, all of the time.

Please don’t refer to her as losing her battle. She never really had a battle to win. She defied Cancer with a fierce determination to live as much as she could. She was happy up to the end. It feels like nothing quite went her way and there was nothing that could have kept her with us but that did not stop her and we are so, so, so very proud of her.

We will figure out how the hell you arrange a funeral and all of that in the coming days and anyone is welcome to fly down and join us. I will keep you posted. It will be happy and joyful and full of light.

To those of you lovely people who will ask what you can do for us we actually have one request. Hannah was such a kind loving soul. If you want to do something for her we ask that you give a little time for someone else in the coming days. Go visit an elderly relative, go spend time with a lonely neighbour, go cut someone’s grass, volunteer an hour of your time to a charity, buy a homeless person a meal. Anything really. Then tell them it was from little Hannah Barry. As a family we have been touched by kindness many times and it would fill her heart to know she had made a small little difference, and I think she deserves that.

I will make this post public so if you shared any of my earlier posts I would like you to share this so those of your friends, many who we have never met, who rooted for and prayed for her, can receive our heartfelt thanks.

I’m not religious but I also do not believe you can love something quite as much as we loved her without there being some crazy way we will meet again.

With all that is left of our hearts,

Good night sweet little girl, sweet dreams. x

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Below is an update from her Dad Paul:

It's been an agonizing day and she hasn't really improved until the last hour or so. Fortunately enough so we could get a smile and cuddles with her Sister. Its heartbreaking to see how fondly she looks at Nora - i'm not religious but I fail to understand how there cant be something else with a Love like that.

At one point today her breathing became so bad we thought we were losing her and to be honest that might likely be the outcome. Earlier we made the agonizing decision to not send her to PICU for ventilator and we wont put her through resuscitation if the time comes.

Through all of this Hannah has shown a level of courage I never thought possible. She has humbled us with her bravery many times and as her Parents its time for us to do the same. It would be selfish and somewhat cruel to delay the inevitable and we are at some level of peace with that decision.

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In June 2017, just a few weeks after her 7th birthday Hannah Barry was diagnosed with Medulloblastoma.

Medulloblastoma is a cancerous tumour located in the brain and is the most common cancerous brain tumour to affect children.

Hannah has had 6 major surgeries on her brain to remove tumours, reduce swelling and fit a shunt. She has completed 6weeks of proton radiotherapy treatment and started a 12 month chemotherapy programme.

This past week has brought the devastating news that Hannah’s tumour has progressed through treated and there is little left in treatment options now.

So far Hannah has shown nothing but strength, determination and bravery way beyond her young 7 years. This is a reflection of how both Paul and Kate have handled this life changing event, and how no matter what is thrown at them they continue to fight.

Living in Florida means that friends and family support is limited to FaceTime and a week long visit when possible from close family members.

Hannah, her younger sister Nora, Kate and Paul need love and support from us all which is incredibly hard when they are thousands of miles away.

The cost of Hannah’s medical bills have been covered already. This fund raising is to (hopefully) raise enough for that emotional and physical support to be given to them in person as soon as possible.

In the coming months, the family would really like to bring Hannah back to the UK to see her extended family and friends and make some precious memories. This is likely to be a costly exercise with the care that Hannah needs, so this fundraising page has been set up to help cover those costs and take some of the pressure from Paul & Kate.

Any amount you can donate will go straight to the Barry family to help with the continued support they need.

With love and thanks

Lucy

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