“If there ever comes a time when we can’t be together, hold me in your heart I’ll stay there forever”

Mum Sarah, shared this Winnie the Pooh quote with us as for her it holds a specially poignant meaning for her and her son, Frankè.

She bravely lives with the heart-breaking uncertainty of not knowing how long she will have with her “cheeky and strong-willed” little boy, Frankè.

When he was just four weeks old, Frankè stopped breathing. This frightening episode led doctors to discover that Frankè has a genetic condition and a number of complex health conditions including severe heart abnormalities.

Over the years, doctors have battled to help Frankè and by the time he was two and a half years old he had already undergone nine surgeries, including several open heart surgeries.

When he was four years old, Sarah was told that sadly there was nothing more the medical teams could do for him and he was given a terminal diagnosis. Frankè and Sarah were referred to their local children’s hospice service, Alexander Devine.

Initially, Alexander’s Nurses and Carers visited them at home to provide specialist care and play, along with therapy sessions for Sarah with our Family Support Worker. Gradually Frankè came in for Day care and overnight stays to give Sarah much-needed respite.

Our clinical nurse specialists have provided symptom management for Frankè to enable him to remain out of hospital as much as possible. They have also helped Sarah in thinking about what her wishes for Frankè might be when his condition deteriorates and there is a need for end of life care.

“Loving Frankè is just overwhelming. I feel I am his whole army, fulfilling so many roles and protecting him as best I can.

It’s always been just Frankè and me. My beautiful, cheeky and strong-willed little boy! His smile and little laugh are just everything to me.

A couple of years ago the thought of leaving him with anyone else was just horrendous. However, Alexander Devine has opened up both of our worlds. I know that I can leave Frankè with them and have peace of mind and utter trust that the wonderful and amazing team will love and look after my boy. Some of the team have known him since birth and they know him inside and out.

For me, I can’t begin to tell you what it means. It has given me precious time to be myself again. As a mum, it takes me away from the pressures of my everyday life and just lets me be Sarah. I don’t think the team at Alexander Devine will ever know the extent to which they make my life so much easier. They are all truly amazing and I don’t know what I would do without them.

Frankè adores his visits to the hospice. He especially loves being in the hydrotherapy pool. Swimming is definitely his most favourite thing! Spending time in the hospice’s sensory room always seems to bring out his playful side and it is lovely to see his beautiful smile.

I am always so touched by all the little details that go into his visits to Alexander Devine. They make it so special, from having a personalised name on his bedroom door to making sure all his favourite activities are planned. He is welcomed with so much love and I feel so lucky that he has this special place he can go to.

Although he is seven years old now, he sadly can’t always go to school as there is rarely medical support available so having visits to the hospice is so important for his wellbeing and quality of life. I am determined to do all I can to fill Frankè’s life with joy and happiness and I am thankful that Alexander Devine helps me do that more than I thought would ever be possible.

Talking about child bereavement is something I have found that not many people want to talk about. But with Tamara, one of the clinical nurse specialists at Alexander Devine, I have appreciated how open she has been with me. She has helped me talk about what to expect, how I feel, where we will go and answered all of my questions. I feel like the subject is so open with the whole team and that is something I love.”


This Spring, will you help us make more moments that matter for children like Frankè and his mum?

Every penny you can give to our Devine Spring Appeal will help bring so much joy, fun and special family time to so many lives:

Need our help?

The word hospice should not seem scary and getting support from us doesn’t have to mean a child’s death is imminent. Helping to enrich the lives of the children and their families is at the heart of our service, our end of life and bereavement support is just a part of what we do.

Our children’s hospice service covers the whole of Berkshire and into surrounding counties. If you think your child may be eligible for our services, please do get in touch.

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Remember our very special Christmas gift from Volvo? 🚗🎁

It’s a gift that really has been making a huge difference to us at Alexander Devine, especially in helping us provide additional support for families like Huzaifah's.

Huzaifah, who is not yet two years old, up until earlier this year had spent just 7 weeks of his life out of hospital. Our team have been supporting the family in trying to keep him safe at home as much as possible, and now we can also help the family with taking him to his hospital appointments for vital treatment.

Using the car meant our Alexander's Nurses and Carers could safely transport Huzaifah along with his wheelchair, additional oxygen cylinders, suction machine and the extra team members we need to keep him safe during the journey.

Thank you Volvo for helping us make even more of a difference to children and families that we support.

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…and relax!

With its mesmerising lights and rainbow of colours, our sensory room is a wonderfully calm environment for the babies, children and young people that we support to explore.

After a busy morning splashing in the pool, getting messy in the creative zone or playing outside in the gardens, it’s the perfect place to unwind (for Alexander’s Nurses and Carers too!)

#LifeAtOurHospice #ChildrensHospiceCare #SensoryPlay #MagicalMoments
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Glitz, glamour, delicious food, fabulous entertainment, music and dancing – all wrapped up into one sparkling evening!

For this year's Heaven Sent Ball on Friday 12th May, we are heading to the stunning De Vere Wokefield Estate, near Reading.

For more information and to book your tickets, visit:

Blue Peak Accounting href="">#fundraisingball #heavensentball Blue Peak Accounting
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Alexander Devine Children’s Hospice Service is the operating name of Alexander Devine Children’s Cancer Trust. A company limited by guarantee registered in England and Wales No. 5757493

Copyright © 2019 Alexander Devine Children's Hospice Service. UK Registered Charity No. 1118947.