As adults, we know that things don鈥檛 always go to plan, and sometimes we have to deal with the unexpected. In these situations, the support and kindness of others can make a real difference to everyday life. is a very special children鈥檚 hospice in Oxford that offers this support and kindness at times like these, when families need it most.
Helen House was the world鈥檚 first children鈥檚 hospice and Douglas House was set up in 2004 to provide the same care to young adults with life-limiting conditions, as well as their families. They offer specialist symptom and pain management, medically-supported short breaks and end-of-life care, as well as counselling and practical support for the whole family.
We鈥檇 like to tell you about Evie and Thomas, two very special children helped by Helen & Douglas House.
Evie and Thomas
Thomas鈥檚 story
Thomas is eight, and lives with his mum, dad and older brother Morgan. Morgan is 10, and has a very rare condition called , which only affects 150 people in the UK. It means that Morgan has regular seizures, often in his sleep. When he was four, a particularly serious set of seizures caused him to lose all the abilities he鈥檇 learnt as a young child. He鈥檚 since begun to move and walk again, but he still can鈥檛 communicate very well. He has no awareness of speed or danger and so he gets about in a wheelchair to keep him safe. Morgan needs a lot of care, and parents Michele and Robert have to be very watchful.
Thomas cares deeply for Morgan. He knows how to give Morgan his oxygen, how to call for an ambulance and what it means to have a seizure. Thomas knows that sometimes he can鈥檛 spend as much time with his parents as he鈥檇 like. This means that he has had less time to do the things children his age want to do, but he鈥檚 very grown up, and he understands why.
Helen House gives Morgan 14 nights respite care a year, allowing Thomas valuable time with his parents. 聽They also run residential breaks for the siblings of children being cared for at the hospice and that鈥檚 where he met Evie and made other new friends in similar circumstances.
Thomas and his new friends.
Thomas鈥� mum Michele was initially wary about seeking support from a hospice, but a visit to Helen House soon changed her mind:
鈥�The word hospice made me apprehensive so it took a year for me to visit, but we watched a DVD about the place and it made me think again. When I went there and saw the children smiling and laughing, I realised that this is the sort of place where anything goes. I vividly remember seeing this one little girl who wanted to dress up as a fairy but she couldn鈥檛 because she was in a wheelchair so the costume wouldn鈥檛 fit her properly. So the male nurse made her a fairy costume by cutting up something else that was in the dressing up box. It was brilliant. She was able to be a fairy after all.
Where鈥檚 there鈥檚 normally a 鈥榥o鈥� from a parent to a child or a 鈥榳e鈥檒l do it tomorrow鈥�, at Helen House they just do it. And siblings in particular get a lot of 鈥榥o, we can鈥檛 because your brother can鈥檛 do it鈥� so it鈥檚 great for Thomas.鈥�
Evie鈥檚 story
Evie鈥檚 also eight, and lives with her mum, dad and older sister Mabel. She loves music (she鈥檚 particularly fond of a certain boy band!), making things and playing with friends. But recently, she and her family have been through a difficult time after her youngest sister Beatrice, just a year old, died.
When Evie鈥檚 mum, Elizabeth, was pregnant, everything seemed fine. When Beatrice was born, however, medical staff soon realised that her brain hadn鈥檛 formed properly, and because of this she was partially deaf and blind. Doctors struggled to diagnose her condition. She had to be fed through a tube and was dependent on oxygen. It was clear that Beatrice would need lots of specialist care.
A little later, doctors told the family about Helen & Douglas House. Elizabeth arranged to visit the house for a brief respite; she planned to stay with Beatrice while Mabel and Evie took part in activities organised by the care team. It was at this time that Beatrice, having always been susceptible to chest infections, caught pneumonia, and passed away. She was just under a year old.
Elizabeth said: 鈥�After Beatrice died in hospital, we were able to bring her to Helen House and stay with her for seven days while family and friends came and said their goodbyes. Meanwhile, the staff were doing things like our laundry and helping us to make funeral arrangements. We were moving house that week as well so it was an incredibly stressful time. But the care from the staff at Helen House was just amazing. It made saying goodbye a lot more humane and bearable in an unbearable situation.鈥�
Beatrice鈥檚 passing had a big effect on Evie and Mabel. The girls had been so excited at the thought of having a little sister to look after, but ended up dealing with something completely different. They both took up the offer of counselling from a support worker, Laura, at Helen House. Laura worked with the girls once a week at their school, also giving them one-to-one support. Mabel and Evie also joined the Elephant Club, a support group for siblings at Helen House. The friends they鈥檝e made there have been an important part of the grieving process for the girls.
Elizabeth told us: 鈥淥ne day, the girls came home from Elephant Club and said to me 鈥榳e met a girl today and she鈥檚 got a sister in heaven as well.鈥� 聽It was great for them to see that they are not alone and that they weren鈥檛 to blame for anything.鈥�
A 鲍鱼tv Children in Need grant of 拢113,000 over three years funds four sibling workers at Helen & Douglas House. For three decades, these hospices have helped children like Evie and Thomas to make sense of their experiences, and to understand that they鈥檙e not alone. Your money means that whatever happens, children and families in unimaginable situations will always be able to turn to places like Helen & Douglas House.
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