Since 1982, we have been helping local families to make the most of every day they have together.
Each family has a different story to tell about their experience of looking after a child with life-limiting and terminal conditions and the support we offer them at the hospice and through our outreach service. Find out how Helen & Douglas House makes a desperately difficult time just a little easier in the stories from our families below.
The story of Helen & Douglas House hospice is the story of the children and families we care for
Meet Pippa and her family
Pippa has been coming to the hospice with her family since she was 5. As she’s non-verbal, the sensory play and music she enjoys with the care team help open up her world and allow her to express herself.
Meet Finley and his family
‘It’s a little taste of heaven and the staff here are wonderful. I can’t thank them enough’. Finley was born in 2008 with a rare genetic condition, GINS1, which means that his growth is restricted and he can be susceptible to infection. He has been coming to Helen & Douglas House since he was two years old with his mum Michaela and little sister Lucie.
Meet Aliza-May and her family
‘Our first visit to Helen & Douglas House was filled with angst and concern, but once we started walking around and talking to the nurses and staff, we were put at ease immediately. Aliza-May Faith Norton was born in June 2017 with a rare syndrome called Edwards. They were told then that she wouldn’t be able to do anything (not even smile) and at the end of the week, she was given 3-6 weeks to live.
Meet Max and his family
‘We have only been coming for five years, but it is hard to remember a time when you were not there for us.’ Max, from Swindon, has been coming to Helen & Douglas House for five years. Max was born in 2007 and has been diagnosed with end stage renal failure and mitochondrial disorder, a condition which means he requires 24-hour care and support.
Meet Toby and his family
Toby is five-years-old and lives at home in Buckinghamshire with his mummy and daddy, Kim and Tim. He has a complex neurological condition called Dravet Syndrome, which means he experiences very frequent and severe seizures.
Lily-Mae was born in 2013 and at two years old she was diagnosed with Rett Syndrome, which caused regular seizures and other complications. Although it took some time for her mum, Leanne, to come around to the idea of going to a hospice, today, she is now so glad she did come for that visit as we helped them both make precious memories together before Lily-Mae died in September 2021
Sophie and Ed’s first baby, Martha, was born in a critical condition and she passed away in Sophie’s arms at 5-days-old on 26 May 2015. They were transferred to Helen & Douglas House that same evening where they were looked after as a family for a few peaceful days.
Imogen died at Helen & Douglas House on 23rd January 2017, aged just 2 years old, after bravely battling a brain tumour and never failing to smile as she endured chemotherapy, only for the cancer to return. ‘Without HDH support I am not sure we would have got through the first year on our own.’
Ollie’s and Ben’s story
Mike is the father of twin boys, Ben and Ollie. Both boys were born with a life-shortening condition and diagnosed age three and a half with MPS – Sanfilippo 111A. This is a metabolism disorder which delays development and causes significant neurological symptoms. Sadly Ben passed away in October 2012, shortly before his 10th birthday and Mike then lost Ollie very recently in May 2018, aged 15.