Mother pays beautiful tribute to ‘confident and imaginative’ daughter

I first met Ralph on a crowded dance floor at Cadmans in Sale. Ralph hadn't danced for many years, and his friend Wayne, who owned the club, had badgered him into going to a class. He spent the whole lesson larking about which made me laugh. We shared the same passion for dance and performance, and within 4 weeks we were a couple both on and off the floor. We entered many competitions, including the British National Championships, in which we reached the semi-finals twice. In 2010, when I was 38 and he was 48, we were married at Sale Town Hall, and celebrated into the night at the place where we'd first met, complete with a swing band.

We only ever talked loosely about having children, and as we had met each other later in life, neither of us expected anything to happen. But in Easter 2011, we discovered we were pregnant. We welcomed Phoebe on 17^th December that year, and both of us decided to give up dancing then. I still enjoyed it and as Ralph would testify, I was very driven, but for me the reward of a trophy could not compare to the sense of achievement I got out of being Phoebe’s mummy. It was everything to me.

At the age of 17 months, Phoebe developed an ear infection, and Ralph and I both felt that there was something more to it due to how unresponsive she was. Rather than wait through the night to see if she improved, Ralph said that we should take her to our local walk-in centre and they rushed us through to A & E. They were very concerned so from there we were whisked in an ambulance to Wythenshawe hospital. At first they thought it could be meningitis or encephalitis, so they ran test after test and gave her all sorts of medication.

It was eventually discovered that Phoebe's levels of an enzyme called creatine kinase had soared to 250,000, well above the healthy rate. This indicated a melting of skeletal tissue called rhabdomyolysis. Luckily, doctors were able to bring Phoebe's enzyme level down during her 10 day stay in hospital. A test for the genetic mutation LPIN1, which affects around 1 in 100,000 people, later came back positive. This meant that if Phoebe contracted any number of common childhood diseases such as a vomiting/diarrhoea bug, it could trigger another episode of rhabdomyolysis. This condition could lead to kidney or heart failure.

Due to the rarity of Phoebe's condition, there was scarcely any information about it.  At the age of 3, Phoebe had another episode of rhabdomyolysis, which prompted me to start doing my own research into LPIN1. The results of my internet search were devastating. I found a website called Shine for Thomas, which detailed the stories of other children who had lost their lives. After this the consultants at Wythenshawe set Phoebe up with an emergency care plan. Phoebe was so healthy and active in between episodes that it was easy to forget she had any kind of condition. 

Phoebe grew up to be a confident and imaginative child, and would always entertain everyone at nursery. Perhaps you could say that performance was in her genes. She would spend every day in character, she was never herself. For months she was planning for her own version of 'Into The Woods' in the garden, and kept telling us who of her friends were going to play what parts. 'Daddy will be my prince!' she exclaimed. Phoebe had a vast repertoire of Disney and musical songs. She sang every day and she'd spend lots of time learning words and playing CDs over and over. There was something seriously wrong if we had a day without song!

When she was 3, Phoebe began singing, dancing and drama classes at Stagecoach Performing Arts school in Didsbury, where Ralph also taught. She also went to classes at Stalder Academy in Sale. As well as music and dance she loved swimming, and even in the pool she was always acting something out. 'I'll be Ariel and you can be Ursula,' she would say to me, after watching 'The Little Mermaid.' Phoebe always wanted to try new things, she never held back or shied away. 'You've got to try Mummy,' she said, 'otherwise you won't know.' The day before we lost her, I took her to swimming class and she tried front crawl for the first time. I was so proud.

On 17^th September 2016, when Phoebe was 4 and three quarters, she suffered her fourth episode of rhabdomyolysis. She was off colour, quiet and reserved in the morning, and then said that her legs hurt, and I knew I had to take her to hospital. That was at about 11-11.30, and we lost her within 12 hours, due to a cardiac arrest.

I have felt a whole range of emotions since losing Phoebe. Some days, I have felt paralysed and every little task feels enormous. We received lots of flowers in the first few days after her death, some of them huge bouquets. Ralph found it too painful to have them in the house, so they were collecting in the garden. I thought this was a terrible waste, and that maybe, with the help of others, we could do something more proactive and which would be longer lasting. That's how I came up with the idea of installing a new roundabout in our local park, Moor Nook park in Sale Moor. I would take Phoebe to the park every week and there had been no working roundabout in the play area for some weeks. She would often ask 'when do you think there'll be a new roundabout Mummy?' A friend had told me about crowdfunding campaigns, so I set up a Just Giving page, and promoted it on social media.

So far, the campaign has raised almost £12,000. There have been contributions from family and friends, as well as Sale Private Day Nursery, where Phoebe went, and The Beauty Bar in Sale, among many others. We had donations from as small as £3 to as big as £300. 

The overwhelming generosity of people has meant that we have raised more than enough for the roundabout.

We are hoping to be able to give the remainder of the donations to a hospital in Paris, Necker Enfants Malades, where research is being carried out into LPIN1.

On 17^th December, which would have been Phoebe's 5^th birthday, we held an opening ceremony of the roundabout in Moor Nook park. We organised for our friend, the actress Ashley Jensen (star of Extras and Ugly Betty) and Councillor Sean Anstee, the leader of Trafford Council, to come along and snip the ribbon. The choir from Stagecoach Performing Arts school, where Phoebe attended, performed a cappella. We were really touched by the number of people who came along.

As a very outgoing child, Phoebe loved parties, and would plan them for months in advance. She had been planning her next birthday party since the last one last December. It was great to see the roundabout in place, and to watch other children enjoying Phoebe's legacy. The more the merrier, because Phoebe would have liked that.

For more information about Phoebe's story, please visit the Facebook page: https://www.facebook.com/phoebesroundabout/?fref=ts