Christmas is a bittersweet time for the parents of kids at the Alexander Devine Children’s Hospice.

On the one hand, there is delight in seeing their sons’ and daughters’ faces light up with joy as they meet And on the other is the ever-present fear that time together may be short.

Hospice founder Fiona Devine knows exactly how these parents feel – the mum of three lost her son Alexander to a rare brain tumour when he was eight.

Alexander was very ill for more than half of his life, and Fiona discovered there was next to no specialist care for children with life-limiting or life-threatening conditions in where they live.

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So she resolved to raise the money to pay for children’s palliative care services in the county and ultimately a hospice to help families like theirs. And this year the facility she named in honour of her beloved late son is able to make a magical time for the sixth year running.

Fiona, 54, says: “I always wanted a big fireplace in the entrance to the hospice so Santa could pay the children a visit. We make Christmas special for our children, siblings and parents. We will also have real-life reindeer visiting and parties and lots of fun.

“Having been a mum caring for my son, I experienced so much that when it came to building this hospice I wanted to make sure the little things that make a difference were taken care of.”

Alexander was born healthy. “Our first born, very much wanted, very much loved, he was your textbook baby, he hit all his milestones beautifully,” his proud mum says.

But just before his fourth birthday he became unwell. He had recurrent chest infections, , nausea, and had fitted a couple of times. He was eventually diagnosed with a rare brain tumour.

Fiona says: “Life within a split second was completely different and within 24 hours he was having his first round of brain surgery.

“We were thrown into a of fear and never knowing what tomorrow might bring. You live from one hospital appointment to the next, one scan date to the next. You don’t know how quickly the cancer is growing, if it’s spreading. It just brings fear.”

Over more than four years Alexander had operations, treatments and therapy to try to give him as much quality time as possible. He sadly died in 2006.

For the last nine months he was looked after at home, with Fiona spending 23 hours a day caring for her son and the rest of her family. That was when she discovered there was little support available to them in Berkshire, apart from a community nursing team visiting for an hour a day.

There was a children’s hospice in but Alexander’s condition and having two other small children made travelling difficult.

Fiona says: “I recognised there was a gap in the service that the couldn’t provide.” In 2007 she launched the charity, and by 2009 they had raised enough money to fund a children’s community palliative care nurse and a nurse in the Royal Berkshire Hospital, known as Alexander Nurses. Fiona says: “I started very small from the dining room table. I did the banking, the thanking, the event planning, the PR and comms, every aspect of it.

“We were just an ordinary family who had been blessed with an extra-ordinary boy and we didn’t have a network or connections, we just started from nothing.”

The late broadcaster Sir became the charity’s founding patron and helped convince a donor to provide land for the hospice building.

Fiona recalls: “Sir Michael told me to bring him to the pub for lunch. I went into that meeting thinking I would like three acres of land and we came out with six, such were his powers of persuasion.”

In 2018, and after raising the £6million capital needed within two years, the completed hospice was opened by Sir Michael and then prime minister and fellow patron – a day Fiona found “amazing and emotional”.

The Alexander Devine Children’s Hospice Service, which still also provides community nurses so children can be looked after at home, has bedrooms, a sensory room, music room and self-contained apartments for families to stay in.

One important aspect of the hospice is the interactive and sensory , donated by the charity Lifelites, to help the children find connection and fun.

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Lifelites is the only charity in Great Britain and Ireland that provides the technology, including the Magic Carpet – which projects interactive images around a child – Switches and iClick, to children’s hospices.

Fiona says: “I love the Magic Carpet. All our children love it, as well as siblings and parents. I’ve even seen our staff have great fun on the Magic Carpet! Finding activities and technology that can bring siblings and families together is rare.”

This family-oriented care is typical of the hospice, which ensures it follows the children it helps through every stage of their journey.

Fiona adds: “We are with children on their journey from a baby to the age of 19. For some, the journey may be shorter than others, but the end-of-life pathway for our children can be over years.”

Three-year-old Elikai Sousa is at the centre of the hospice’s Christmas appeal. He was born with a congenital brain abnormality, and parents Annicka and Politon were told he would not even survive .

Annicka says: “We treasure each day with our precious son. But the future remains uncertain.

“To be able to come to Alexander Devine and experience the magic of Christmas and for a while forget about what might be is precious. His condition means that Elikai’s brain didn’t develop fully.

“But he is still here to enjoy another Christmas. His life is filled with complexities and he needs round-the-clock care and a closely managed routine of medications.

“Simple activities that other three-year-olds enjoy, like playdates and park outings, aren’t always possible, but the hospice provides a safe space where he can play, laugh and make memories with us.”

Sir Michael died in August 2023, but his widow Lady Mary and sons remain involved with the charity. Fiona adds: “He helped us a great deal and was a lovely man.”

Fiona was awarded an for services to children’s hospice care in the King’s Birthday Honours list in June, and received her medal last month from .

“It was a hugely proud yet surreal moment,” she says. “I wasn’t quite sure why I’d got it. I attended with my children Caitlin, 21 and Harry, 20, who are hugely proud of their brother’s legacy. Everything we’ve done and do is about Alexander. I’m just Alexander’s mum at the end of the day.”

Gemma Maxwell has been taking her daughter Talia, who is deaf and non-verbal, to Alexander Devine for five years.

The seven-year-old is a big fan of the Magic Carpet, which she has played on since she was tiny.

Gemma says: “The good thing with the tech is that she’s completely deaf and doesn’t follow verbal instructions but she manages it really well. She can play football on the Magic Carpet with her brothers, so it’s a great way for them to interact together and for Talia to get involved.”

Lifelites 25 campaign aims to get organisations to apply for one of 21 packages of assistive technology, each worth £25,000, and four grants of up to £250,000. Deadline is January 10. Winners will be announced early next year. For more information go to

For more information on the hospice’s Christmas appeal, visit