Amy and Shane, from Plymstock, found out they were having a little girl at their 20-week scan. But at the scan, professionals noticed that Evie had abnormalities.
The couple underwent further genetic testing, and that’s when it was revealed that Evie had a rare chromosome deletion, so the family went on to see a geneticist.
The geneticist did not think Amy would make it to full-term pregnancy, and if she did, he only gave Evie 24 hours to live, but she proved them wrong.
Evie came 6 weeks early, and a lot of problems started to show. As she got older, the little girl wasn’t fitting into the boxes for anything, and it was starting to get complicated for the family.
Amy said: “Her kidneys had taken a real bashing, and then we found out she had kidney stones. She had treatment for them, and we were referred to Bristol and then Birmingham.”
The complications persisted, and every intervention that was offered to the family came with its own set of risks. Evie’s consultant spoke with the family’s community nurse, and said, “I want to help this family, they need a break.”
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The family first began visiting Little Bridge House during COVID, where they received care for 2 years, and had numerous stays.
Evie attends Woodlands, a special needs school in Plymouth, where several children who are supported by Little Harbour also attend. Amy spoke to their community nurse at the time and asked if they could be transferred to the hospice in Cornwall, as it was closer to them. The family were moved down to Little Harbour and have been visiting for 2 years.
Alongside her chromosome deletion, Evie also has microcephaly. These 2 conditions result in Evie struggling with bad sleep. Even though she does have medication to help, it doesn’t aways work.
Amy said: “Our days can start all over the place, or some days she’ll be asleep for an hour then awake all night and through the day. It gives us a break when we’re at the hospice. It is hard, Evie needs 24-hour support, every hour she needs some sort of intervention”.
“At the hospice we can put her fluid chart down and we haven’t got to clock watch. We can go out for the day with Skye, or our last visit it was just me and Shane. We were able to sit and talk about something different, other than Evie. As harsh as that sounds, it is nice not to think about what she needs next, or what we have got to do next.”
The family can also go further afield for days out if they want to when they’re at the hospice.
“Everything is really regimented and planned in our life, so it's nice to be spontaneous when we’re down there”, said Amy.
“We’re quite a private family, but when you’re in the setting of the hospice, you don’t need to know the ins and outs of everyone’s child- everyone just gets it. I never thought I’d know what the inside of a hospice would ever look like.”
Amy and Shane were first made aware of CHSW when a student at Skye’s primary school died from cancer, who was supported by the charity. They never thought they would eventually need support themselves.
“When our consultant mentioned it, I said I didn’t want to think about that. I didn’t like the word ‘hospice’”, said Amy.
But then, when we went to Little Bridge House, we ended up calling it our holiday place, or Evie and Skye’s getaway.
Amy and Shane feel their children can be their complete selves at the hospice. Skye can be carefree and do as she pleases, and Evie is able to relax. Evie is now used to being around strangers when she is poorly and receiving care. When she first came to the hospices, Evie was quite apprehensive, but now she can relax at Little Harbour, as she knows she is safe and nothing bad is going to happen. She is a sociable child who loves everyone.
As Evie is non-verbal, people around her have to be guided by her reactions to things, but Evie understands that she is safe and comfortable, and this is reflected through her mannerisms.
“She was quite clingy at first, and me and Shane had to be with her all the time. But now she waves goodbye, crawls up the corridor and off she goes to make friends.”
It’s a nice place to be, where you can step off the merry-go-round. You get to be yourself for a few days, a few hours, and let your mind just breathe and stop racing for those few hours or days.
When Evie is at Little Harbour, she loves being in the hydrotherapy pool and the soft play. She is such a sociable child and just loves to be in the thick of it. She will hang out with the teenagers when they’re playing pool and in messy play. She is happy to sit in the middle and watch everyone.
Amy loves spending time in the Crow’s Nest, the watch tower of Little Harbour, that has seating and panoramic views of St Austell Bay. She goes up there to spend quality time with Skye. Up there, they know they are still close to Evie, but they’re also far enough away that they can have those precious moments alone together.
The family take part in various fundraising events to support CHSW. They take part in Rainbow Run and Santas on the Run each year. Amy has done Firewalk, and Shane is taking on Plymouth Half and Ride for Precious Lives again this year.
“This is why we do the fundraising; it’s our way of giving back”, said Amy.
“I know I can come down, have a stay, and know I have done my bit; it is our thank you.”
People don’t always realise Evie is disabled when they first meet her, as she used to have a generic pram as an infant. She is 8 but she is the size of a 3-year-old.
Amy said: “She is tiny. When we’re at the events, because you’re around other families that are supported by the hospice, or they know about the hospice through their friends, we get to go to these events and not worry what people are thinking.
“You get to let your hair down and enjoy it. Whereas in everyday life, we worry what people are thinking and how Evie is going to react to things.
“At the hospice, and at the events, we get to make memories that last a lifetime. It is hard to put into words what it does. The sleep, the food, and the care Evie gets, it is all amazing.”