Watch Jenny and Nathan's story and do something life-changing this Mother's Day
Covid-19 has made a negative impact on fundraising for the hospice in the last year.
Donate today to ensure local children and families get the ongoing medical and end of life care they urgently need
Helen & Douglas House hospice provides medical care and respite to local children with life-shortening conditions like Nathan and their families, living in Oxfordshire and the surrounding counties. At the Hospice, in their own homes, in hospital and over the phone. Whenever and wherever we are needed.
Despite the COVID-19 pandemic, our services have never stopped. But, we have had to adapt, which we have done by offering more support for children and families at home. What is already a stressful time has been even more challenging for parents like Jenny who have children with intensive care needs like Nathan. But you can help to make the experience easier.
Last year, thanks to donations from supporters like you, we helped ease the pressure on the NHS during the pandemic by caring for twice as many children who needed end-of-life care compared to the year before. Despite the Covid-19 pandemic, our services have never stopped but there has undoubtedly been a huge impact on our income. We wouldn’t exist without donations from supporters like you. A donation from you today could provide:
- Family accommodation so mums and dads can stay close by while their children receive end of life or respite care.
- Emergency care from a paediatric palliative care doctor.
- Outreach nurse visit for a child, who has a life-limiting or terminal condition.
Nathan was born in 2011 and was diagnosed with Prader-Willi syndrome shortly after birth. Children like Nathan, living with this rare genetic condition, need round the clock care even through the night, as resuscitation and night awakenings are a regular occurrence. His condition includes a wide range of physical symptoms, learning difficulties and behavioural problems.
He has low muscle tone and balance issues which mean he needs a frame to walk, or a wheelchair for bad days and long distances. He is fed through a tube and is at high risk of choking and overeating and also has learning difficulties, narcolepsy, is deaf and has impaired vision.
'Nathan is fed four times a day and he can't hear at all. He has severe sleep apnoea, so when he is asleep, he sometimes forgets to breathe. This means he has to be resuscitated regularly at night and sometimes during the day if he has his nap.
How we support Nathan and his family
Here at the hospice, we understand that conditions like Nathan’s impact the whole family unit, not just the child that is ill. Supporting the family means that Nathan can receive the highest standard of care both at home and during supportive stays. Importantly we also ensure mums like Jenny aren’t driven to exhaustion.
'The first time hospice was mentioned to me I was scared. In my eyes, a hospice was for end of life care. I didn't realise they offered lots of other support. It was scary leaving him at the hospice at first, but they asked me how I look after him and learnt from me.'
'There is no other service that I would have trusted to provide the specialist medical care Nathan needs. I really don’t know how my family would have coped if the hospice hadn’t stepped in to help.’
Jenny - Nathan's Mum
Nine years on from when he first stayed, Nathan and his family continue to rely on us for the care and support that he needs. Last year has been especially hard for the family as Nathan was diagnosed with COFO scoliosis. This has resulted in severe curvature of his spine and he now has to wear a body brace, every day which gives him very little movement.
Despite his many medical complications, Nathan is a happy boy who enjoys singing and doesn’t let anything stop him. When Nathan visits the hospice he enjoys the activities we can offer him that accommodate his complex needs such as time in the hydrotherapy pool and various forms of play and animal therapy. Things he simply could not do without the specialised equipment and staff we have at the Hospice.
Nathan’s brothers and sisters have also received support by attending siblings groups and counselling. With support from the nursing team here at the Hospice, they have also learned how to help care for Nathan
'This place isn't just about medical support. It's emotional support as well. They supported me when Nathan needed a new chair this year. It’s like I’ve got someone who has always got my back’.'
Donate today and help local families like Nathan’s
At this difficult time, your support is needed more than ever before. Please make a donation today. Donations from supporters like you help to provide regular supportive stays for children like Nathan, where he visits the hospice for a couple of days and nights and is looked after by our specialist care team.