Support of Alexander Devine Children's Hospice 'like a hug'

A mother whose daughter has a number of life-limiting and life-threatening conditions has described the support she receives from a Maidenhead hospice charity as like ‘a hug’ as it marks its 15th year.

Alexander Devine Children’s Hospice Service, in Snowball Hill, Woodlands Park, was established on April 25, 2007 by Fiona and John Devine, who lost their son Alexander to a rare brain tumour in 2006.

This year marks the charity’s 15th anniversary since it was borne out of grief and a family’s desire to help others going through the same experiences as themselves.

In 2018, Alexander Devine opened the doors of its children’s hospice, three years after the first spades were planted in the ground.

Danielle and Alan Wilkinson’s daughter Pippa, nine, has been supported by the charity for about four years.

The youngster has severe epilepsy and feeding difficulties and requires round-the-clock care, with her parents needing to stay alert in case of emergency medication or oxygen at any time.

Alexander Devine supports the family by providing respite for Pippa at home and in the hospice, as well as symptom management for Pippa’s complex health needs.

It also offers hydrotherapy in its dedicated swimming pool and provides Pippa’s brother Elliot, 12, with sibling support, spending time with other children his age in similar situations.

“Their support to us is invaluable,” said Danielle, who lives in Tithe Barn Drive.

“They are there through all sorts of different issues, whether it be emotional support or medical advice, and that’s not just to Pippa but also to Elliot.

“It’s brilliant how they provide this hug. They are just there all the time and the hospice does not feel like a sad place, it is not full of mourning. All the time we spend there it is full of happy memories.”

Danielle said that facilities such as the hydrotherapy pool enables the Wilkinson family to do things together they would not normally be able to do.

“They have a lot of fun and laughter but we know they are there for all the other things as well; lots of expert medical advice when things have been difficult for us and changes in Pippa’s condition,” she added.

“They are there to explain and put it into first person language.”

The opening of the hospice in June 2018 has enabled families in the Maidenhead area to access specialist support much closer to home, which Danielle described as ‘life-changing’.

“The nearest hospice previously was about an hour away and their catchment area was quite large so there was a huge need in Berkshire. It is kind of life-changing,” she said.

“As a family with a child with complex needs, we have had to learn a new normal and how to manage things day-to-day.

“Without Alexander Devine it could become impossible for families to deal with. Their support means we can start to live a life.”

Danielle said that she has noticed changes in both her child-ren’s behaviour since they started attending the hospice.

“Pippa really does enjoy her days at the hospice and all the nurses and carers, they just have this warmth about them,” she said.

“Pippa is non-verbal so it is a case of things you would do when connecting with a baby and she can feel that and I can see how happy she is.

“You can see in her face and behaviour how relaxed she feels there.”

Elliot benefits from sibling clubs at the hospice, which includes interactive days for brothers and sisters, while there are also opportunities for the supported child and their siblings to enjoy activities together.

“I want to thank Alexander Devine from the bottom of our hearts for everything they have done for us and all the other families at the hospice,” Danielle said.

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