On 13th February 2020 our world changed and sadly lost our little lady. Since Rose was admitted to Hospital and started to deteriorate I, Rose‘s Dad, couldn't get the song from James Blunt called Monsters out of my head. I sat every night for 7 days trying to rewrite it to relate it to the situation we had found ourselves in with Rose. In the end I reached out to Kat Vaughan and Simon Morgan for help and they created this beautiful song. As soon as I listened to it I new I couldn’t keep it to myself. The fund raising is about us giving back to Noah’s Ark Children‘s Hospital, Ty Hafan and Latch who cared for Rose on her Journey. Surely something good has to come out of our living nightmare!

After a long nine months and an amazing surprise when on 11th February, we were blessed with our baby girl, Rose Elizabeth, to complete our little family after having a boy, six years earlier. Our son is just the perfect gent and has longed for a sibling, when he knew he was going to be a big brother, he took his role to the next level. Rose’s first Christmas he sat with his little sister and opened all her presents before his own. When out shopping he would always ask to buy Rose a gift, always kissing her, even when she would shout at him or blow raspberries, he relentlessly smothered her with love. Life was good, not perfect, but good. Our children were healthy and enjoying their best life. As Mam, Catherine was lucky enough to have the summer off, spending time with the family and in West Wales.

Rose was developing perfectly, she was enjoyed trying new foods and was fully weaned, the mess on her clothes confirmed this. She wasn‘t the most sociable and loved being in her Mams arms, she was known as to the family as their Little Miss Unsociable. But was loved by all, her smile drew everyone in.

In October 2019, eight months old, Rose took her first plane ride on a family holiday with her grandparents in tow, she loved the swimming pool and late night shows, the music and dancing made her smile glow.

Rose’s first Christmas was a busy one, we enjoyed a pantomime with all the family, where Rose danced and smiled all the way through.

Rose was such a quiet soul, she only cried when she wanted something or didn’t want to be near someone, especially her Dad. But that was Rose, our Little Miss Unsociable.

On New Year’s eve 2019, Rose just didn't seem right. She had been having bowel problems, which doctors put down to constipation and a milk protein intolerance. With that in mind we took a trip to Prince Charles Hospital, South Wales. Rose was admitted, she was suffering with such pain with her bowel movements, she was so content and happy, until she needed to open her bowels, then she became upset, the scream will always haunt us and no doubt the staff that cares for Rose.

During the time Rose spent at Prince Charles Hospital, she endured CT scans, X-Rays, ultra sounds and countless blood tests, the poor registrar who always seem to be on shift when bloods were needed, named himself Rose‘s vampire, she was like a pin cushion. As time went on, Rose began to deteriorate, she lost weight, refused solid foods, was being fed milk via and NG tube, despite her pulling four of the tubes out. Her cries became less but silent tears began to fall when she had procedures done. We watched our beautiful, happy little lady deteriorate.

On 12th January 2020, Rose was transferred to Noah’s Ark children's hospital of Wales, after Prince Charles Hospital conducted a adhoc CT scan after all other tests had led them nowhere, where they found Rose had suffered several bleeds to her brain, staff rushed in to the cubicle and arrangements were made for Rose to be blue lighted via ambulance to the children‘s hospital in Cardiff. It was a worldwind, Rose was linked to all machines possible and we were whisked away.

We arrived at Noah’s Ark, not knowing what was going on, the staff were amazing, they were composed and supportive. Rose was made comfortable and we went to bed, unknown to us, our life was being turned upside down.

As the days went on and further tests were conducted, biopsy was taken, seizures took a hold of Rose and emergency theatre was required to have a drain fitted to her head to release pressure from her ventricles in her brain, days after we were told, what we thought was the worst possible news, we were told Rose was suffering random bleeds to the head a condition named multiple cavanomas. In layman terms our beautiful girl was a ticking time bomb, as the bleeds continues to happen, depending upon where they happened in her brain, depended up on what side effect Rose would encounter next. She slowly lost use of her legs and her right arm, the worst bit of all was she failed to smile after 11th January 2020. We were hoping and praying her amazing smile would return, but it didn’t. Whatever was happening in our baby girls head was taking her personality and ora away bit by bit And we had to sit there and watch while results were being gathered and teams from all over the UK were looking into Rose‘s symptoms.

On 27th January 2020 Rose‘s team of doctors and surgeons delivered the news, again which we thought was the worst, not knowing the worst was yet to come. We were told that there was no more they could do for Rose and that they would need to get her to a place where she was well enough to go home? As parents we had no idea how we would deal with Rose in the outside world, given the disabilities she was left with, when only the month before she was just perfect and appeared healthy. We were distraught.

Then from nowhere, 28th January, one of Rose’s consultants came dashing through the door in ICU, grasping at words to explain that the biopsy had come back and it was cancer, the result was preliminary and the consult explained that they wouldn’t normally act until a full diagnoses was provided, but Rose was so poorly, they needed to act fast. Rose was prepped for surgery, a central line was fitted and a non-specific, broad spectrum chemotherapy was administered the same night. We had hope, we had a diagnosis. We had no option but to ride out the journey and hope the chemo was enough and was given in time.

Chemo continued, but on 30th January, just when we thought we were on a hopeful road, the consultants delivered the news no parent should ever have to hear, we were told Rose’s cancer was rare, aggressive, inoperable and that we had weeks left with her. 12 days before her first birthday, how did we get here.

We had many conversations and decided Ty Hafan was the place we needed to spend with Rose as a family in her final days. Noah’s Ark made this happen. We were transferred to Ty Hafan 10th February 2020, what a place, the staff are something else, nothing is too much trouble and they are there with you every step of they way.

Rose celebrated her first birthday 11th February and passed away in her mothers arms on 13th February 2020 At 7.32am.