Ava’s story

“If I call the hospice, I usually hear Ava singing in the background. I think she must be the loudest person on the unit!”

These are the words of Judith, Ava’s mum, whose daughter thrives when surrounded by people:

“She’s such a happy soul and happiest with lots of people around her,” she said.

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A range of complex medical conditions means Ava requires round-the-clock care.

She has a Cerebral Visual Impairment (CVI), which affects her sight, and severe epilepsy causes almost daily seizures. In addition, Ava has severe cerebral palsy and is mostly gastro feed – although Judith reveals her daughter has recently been able to try small amounts of food, “which she absolutely loves.”

Ava has been attending monthly short breaks at St Oswald’s Hospice since she was 2 years old.

Judith explained: “The consultant referred us to St Oswald’s Hospice because he could see how worn out we were. He got us to think about the fact we needed time to rest so we could give Ava everything she needed when she was with us.”

Ava celebrated her 13th birthday in November with a bowling party attended by her cousins and beloved sister, Molly, who is 15.

“Molly adores Ava and Ava adores Molly. It’s a very special relationship,” Judith added.

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Ava is a sociable teenager who loves participating in as many lively activities as possible. But when it comes to bedtime, Judith has a strict routine

Judith described:

“Ava has a bath just before having her final feed and then her last medications are administered. We’ll then settle her down to sleep, which can take two or three hours.”

Ava’s medical conditions mean she needs checking and repositioning throughout the night – the responsibility of which falls to Judith and Ava’s dad, Mark.

“You don’t actually have what other people would consider a proper night’s sleep because you’ve always got one ear open,” mum revealed.

During Ava’s short breaks, the care team follow a similar bedtime routine to allow the teenager time to recuperate from her active days.

“Ava’s done loads at the hospice over the years. For example, she been on an accessible boat, visited an aquarium and, just last week, she went to the theatre,” Judith explained.

Ava also loves spending time in the sensory room at the hospice.

“Her CVI means we’re not sure how her brains translate things,” Judith described, “but we do know that in the sensory room, she can detect the differences between light and dark. She can track objects under UV light and this and the noises really enhance her.”

Our sensory room is very versatile. It can be used as a bright and vibrant place or adapted to become a more ambient place to encourage relaxation which helps our children and young adults get a good night’s sleep.

For Ava, the sensory room is perfect for helping her unwind after a day filled with music, fun and friends, while a few miles away, her family is doing the same at home.

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“St Oswald’s Hospice has been the lifeblood of our family. It’s given us time back with our older daughter and enabled us to recharge our batteries."

“Knowing that Ava is being looked after so well at St Oswald’s Hospice, and that she has access to something as vital as the sensory room, is amazing.

“Every penny that’s raised as part of the Good Night’s Sleep Appeal for the sensory room is greatly appreciated as it helps make things easier for everyone.”

Update on our Good Night’s Sleep Appeal

Sensory environments can be highly absorbing, providing a moment of comfort and calm for children who struggle to self-regulate. The safe and controlled nature of a sensory room is the perfect environment to prepare for bed time and ensure that the young people are calm, relaxed and ready for a good night’s sleep.

This is why, with your support, we are hoping to raise £25,000 to refurbish our sensory room as part of our Good Night’s Sleep Appeal, to replace the equipment and reconfigure the space so it better fits the complex and varied needs of the young people we support.

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