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"We got married so our little girl could be there": Violet's story

January 04, 2024

***Trigger warning: infant loss***

Emily and James always knew that they would get married one day and they always thought they had more time, but their plans to get married in the future were altered when their baby girl Violet was unexpectedly diagnosed with an extremely rare medical condition. Violet’s health deteriorated faster than expected and even though they knew Violet’s condition was life limiting, they expected to have much more precious time together as a family.

Knowing that Violet would need to be moved to a hospice, Emily and James made the decision to have a special bedside blessing at Noah’s Ark Children’s Hospital as soon as possible, to ensure Violet could be there with her siblings. Having accommodation at Ronald McDonald House Cardiff meant they were not only close to Violet, but they also had a private place to celebrate their special occasion with family and friends.

Shortly after moving to a children’s hospice, Violet passed away in her mother’s arms at just 11 months old.

Guest blogger: Emily

When my baby girl Violet was born on 23 September 2022, she began her life as expected, happy and content with no signs of anything being wrong. After an initial hospital visit to be treated for bronchiolitis, my instincts told me that something wasn’t quite right with Violet. With my two other young children, Theo, six, and Logan, four, as a guide, I had noticed that Violet wasn’t developing at the same rate as my boys when I compared them.

At just two-and-a-half months old, Violet was taken back into hospital because I’d been noticing a lot of erratic eye movement and she had issues with her vision. Violet had a lot of hospital stays but in May 2023, she became worse and had to be transferred from our local hospital to Noah’s Ark Children’s Hospital Cardiff. It was here that the doctors were able to provide us with a diagnosis, after I had done a lot of searching online to get answers for myself.

After a series of genetic tests, it was confirmed in June 2023 that Violet had something known as TBCK, a neurogenetic disorder caused by genetic mutations. The disorder is rare throughout the world and currently does not have any cure. There are only around 100 documented cases of TBCK in the world and Violet became the first ever person in Wales to be diagnosed with the disorder – that’s how rare it is. It was such a relief to get a definitive diagnosis, but at the same time it was overwhelming to learn what this meant for Violet going forward.

My partner, James, Violet’s dad, and I began to have more concerns. Not only about Violet’s needs but also about my boys. I worried about leaving them back at home in Caerphilly, 35 miles away from the hospital, and alternatively leaving Violet alone on the ward. It was worrying being unsure if she would be getting the care she needed without me around.

Luckily, we were informed about Ronald McDonald House Cardiff by the hospital staff. Within two nights, we had been allocated a bedroom after a nurse had helped us to complete our referral form. Instantly, we felt relief. Just knowing that we would have somewhere so close by to call our own was reassuring. We experienced a mix of emotions – the fear and worry of Violet’s intensive care stay but also the relief of knowing we had this amazing place to relax in and call home, for as long as we needed.

Having Ronald McDonald House meant that we could be at Violet’s bedside whenever we wanted to or needed to. Our bedroom had a telephone that was linked to Violet’s ward which was such a comfort to us – we could call or be called directly. We were lucky enough to be allocated a bedroom that faced Violet’s ward and we could see the window of her ward all the time.

The House was invaluable to us. Theo and Logan were able to be with us during Violet’s hospital stay and as the ward was too intense for the boys to stay there for long periods of time, the House’s facilities allowed them to have a break away in a more homely environment. We were so happy that we were able to spend our time with all our children.

We had the boys staying with us at the House every weekend, depending on whether Violet had a ‘good’ week. They absolutely loved the place, especially the garden and play areas and all the special events and activities the staff arranged. We stayed at the Cardiff House as they celebrated their sixth year of being open for families. They had a big beach-themed party that we attended, and Theo and Logan loved it.

When I think back on our stay at Ronald McDonald House Cardiff, there is one special memory that stands out more than others – we got married while we stayed there!

Very sadly, around six weeks into Violet’s stay on the intensive care unit, we were informed by the doctors that her medical issues were too severe and there would be no viable treatment options to try. We knew that Violet’s unique condition was life limiting but every case is different, and her health began to worsen faster than expected. It was at this point that we knew our next step would be to move Violet to a children’s hospice.

James and I had planned to get married when we had more time and more money in the future but with everything going on, we made the immediate decision to get married within the week of receiving the heart-breaking news. We were determined to get married as soon as possible so our little girl could be there with us a family on our special day.

On 29th July 2023, James and I got legally married at our local registry office and returned to the hospital to be with Violet. We had a very special blessing by Violet’s bedside on the ward with the boys and exchanged our wedding rings. With the wonderful support of the Cardiff House team, we then returned to celebrate with our guests. They kindly provided a private space in their board room and even decorated it to make it extra special for us all. Along with the hospital, Ronald McDonald House allowed us to have a wedding day to remember with our three children together and all our closest family and friends.

We honestly do not know what we would have done without the support of the House. The amount of travel that would have been involved with going back and forth from home to the hospital would have been unthinkable. It would have affected us financially with the cost of petrol and alternatively, if we’d had to consider staying at a local hotel for a long period of time, I doubt we could have afforded it.

When we left the Ronald McDonald House, it was an extremely emotional experience. It felt like the end of a very special era and I was sad to be moving from the House to the hospice. I never imagined we would be there for as long as we stayed and I’m so grateful to the amazing staff who really made me realise how invaluable the Charity and their support is.

Ronald McDonald House Charities UK is an amazing cause for people to fundraise for or donate to and it needs to be recognised by more people. I think most of the public are unaware of the Charity and what their mission is. They support families like mine during the absolute worst times of their lives when their children are poorly in hospital.

We only had two weeks with Violet at the children’s hospice before she passed away in my arms. The previous two months on the intensive care unit meant that we couldn’t hold her much or even take her anywhere. But thanks to the accommodation at Ronald McDonald House Cardiff and the proximity to the hospital, we were able to sit by my little girl’s bedside for up to 14 hours of the day, giving us that precious time with Violet.  Myself, my husband, my boys and my whole family will be forever grateful to Ronald McDonald House Cardiff for everything they have done for us.

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