Our Story

The journey so far known as Rose's Way , this is Rose's story.

Rose Elizabeth Jeans was born on the 11th February 2019, a carbon copy of her big brother Oliver, labelled our little gent within the family. Rose completed our family unit, Catherine, Andrew, Oliver and now Rose, we were not perfect, but happy. We had a girl to spoil and a doting big brother in Oliver to show her the way. But, Rose had other plans, Rose had her own way.

Our Rosie Bear had a smile that could light up any room, but always reserved her own right to chose who she shared it with, and because of this became know affectionately as ‘Little Miss Unsociable' to all those who knew and loved her, but was always happiest when she was in her Mam’s arms.

From around 6 months old, Rose was suffering with what was thought to be minor bowel issues, after several GP visits and then eventually two hospital visits, Rose was diagnosed with a dairy intolerance, just as we started to get our heads around the the changes in Rose’s diet, aged 10 months old and enjoying her first Christmas, our little Rosie Bear was reaching all expected milestones, true to form, shouting ‘Dad’ but never Mam and waving whilst saying ‘Hiya’ to her big brother, even trying her very best to walk. New Years Eve 2019 struck, Rose just wasn’t right, what we thought at the time it was a flare up of her intolerance, which was unresolved by all recommended treatment, we used our parental intuition and persevered seeking medical advice at Prince Charles Hospital, Merthyr Tydfil. After several tests, scans and nutritional intervention, Rose’s consultant and her team at Prince Charles was baffled as all the scans and tests that they had conducted led them nowhere, but a precautionary scan of Rose’s head showed several masses on the brain. Our hearts broke. How did we get here? Our baby girl had started to be less and less conscious and she was being fed via a NG feed tube.

Our Story Continued...

On 11th January Rose gave us her last smile, the smile that lit up a room and something we took for granted. The smile was one of the first things the tumour took from our girl. Rose was labelled nil by mouth within minutes and within a few hours blue-lighted via ambulance transfer on 12 January 2020 to the Noah’s Ark Children’s Hospital, Wales. After several MRI’s, CT scans, three brain surgeries, several seizures and 6 nights spent in the Paediatric Critical Care Unit on, 28th January 2020 we received the soul destroying news that Rose's condition was not a routine bowel issue, but cancer, named A.T.R.T, Atypical Teratoid Rhabdoid Tumour, a rare tumour affecting the brain and spinal cord. The large tumour in her spine had been causing the bowel problems, yet our resilient and beautiful girl failed to give any signs or present any other symptoms for almost 5
months. Rose done it her way.

There was no treatment, there were no further surgeries that could be done, to be told as parents we had ‘a few weeks at most’ with our gorgeous girl, was the most heartbreaking words ever to have reached our ears.

On 10th February we were transferred to Ty Hafan, we as a family chose to go for Rose to grow her wings. Then just 2 days after her first birthday, on the 13th February 2020, Rose passed away in her Mam’s arms, the place she found the most comfort.

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Mission statement.

As Rose’s parents, we vowed that Rose's fight was never going to be in vain, and that every minute we treasured from Rose's diagnosis until their emotional goodbyes became a treasure, a reason to support others like us living a parent’s worst nightmare.

We will always be haunted with the memories of the procedures, the scans, the seizures, the endless blood taking and Rose's silent tears of exhaustion.
We aim to walk alongside with the families whose child is terminally ill and those families, like us who have been bereaved, so they are not alone on their journey, providing support that is specific to their needs including curative activities, counselling plus memory making and provide short breaks. We are in the very early stages of our charity voyage, Rose's legacy will live on, her strength and determination lives on in us - and it will be achieved by doing it Rose's Way.

All of us, with Rose’s Way Foundation are making it our mission to support families both emotionally and financially and give them a chance to create lasting memories for not only for the children who are terminally ill, but both the parents and siblings as well. We vowed Rose’s suffering, albeit short, would not be in vain, we will endeavour to ensure our Rosie Bears legacy will live on.

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