Nathan was born in 2011 and was diagnosed with Prader-Willi syndrome shortly after birth. This rare genetic condition is severely life-limiting and causes medical complications including low muscle tone, insatiable appetite, severe balance issues and narcolepsy. This means that Nathan requires 24/7 care.
Despite these challenges, Nathan’s life, and medical journey, has been filled with joy, resilience and unwavering support from his family and the dedicated team at Helen & Douglas House.
The Early Years: A Family’s Respite
Nathan lives near Banbury with his Mum, Jenny, Dad, Stuart, and his three older siblings, Craig, Leigh-Ann, and Kayleigh. At a year old, in 2013, Nathan came for his first stay at Helen & Douglas House. This initial visit provided much-needed respite from 24/7 care for Mum Jenny, and it allowed her to spend time with Nathan’s siblings. Since then, over the past decade, Nathan has become a regular visitor to the hospice and he and his family rely on the care and support we provide.
Jenny, Nathan’s Mum said about his first stay: ‘It was scary leaving him at the hospice at first, but they asked me how I look after him and learnt from me, which put my mind at rest. They care for him in the same way as I do at home, this means there is consistency between the hospice and home’.
Hospice Visits
Despite complex and increasing medical complications as he gets older, Nathan is a happy boy and is always eager for a game of football. His visits to the hospice are filled with activities he loves such as spending time in the therapeutic pool, baking and singing.
Jenny said: ‘Nathan loves coming to Helen & Douglas House. It’s his favourite place in the world. It lets him be him, rather than having to worry about his medical needs.’
Family Support
The support provided by Helen & Douglas House extends beyond Nathan, to his entire family. His siblings have attended sibling support groups and received counselling and have learnt how to help care for Nathan and assist with his medication and tube feeding. Mum Jenny has faced health complications herself over the past few years, and during these times, Nathan’s stays at the hospice have been crucial for her well-being.
Jenny told us this about our care team at Helen & Douglas House. She said: ‘They are the people I turn to when I need help. They know me very well and whilst I can be a bit of a mama lioness, they understand that as well. The consistency of care they provide is brilliant.’
Overcoming Critical Health Challenges
Last year, Nathan became very unwell. In June 2023, Nathan had a perforated bowel, which led to sepsis shock, and cardiac arrest. His family were told that he wouldn’t make it and were told they had to say goodbye to him. He was taken from The Horton Hospital in Banbury in a category one* ambulance to the John Radcliffe Hospital in Oxford, and then operated on immediately.
*Category one ambulance: for life-threatening injuries and illnesses, specifically cardiac arrest.
Nathan had nine wash out surgeries and a tracheostomy. He was so weak he couldn’t get off the ventilator. He was given adrenaline to keep his heart going in the ambulance. They also struggled to get the right antibiotics to battle the sepsis infection. Jenny said: ‘Things were bad. The worst they could have been.’
Jenny’s first call was to Helen & Douglas House. ‘They were there from day one. Explaining things when I couldn’t understand, for a hug when we were low, for pain management after his long stay in intensive care and reassurance when we had to make hard decisions. We planned discharge to Helen & Douglas House so I could rest and get ready for the long road ahead. From food packages to a shoulder to cry on, they were there every step of the way. I couldn’t have done it without them.’ – Jenny, Nathan’s Mum
Continued Support
Nathan survived and recovered from his surgeries and is now back to his cheeky self. He continues to come for supportive stays at the hospice. Recently, he went to Cotswold Wildlife Park with his family on a trip organised by the Play Team. This was a chance for them to get out and about after a challenging year for Nathan’s health. On their trip, Nathan told us some of the animals he saw (or was hoping to see)!
Nathan said: ‘I love everything about Helen & Douglas House, especially cooking. It’s nice to have a break from mummy. I have so much fun! I love Maria and schooling. Also playing with Chloe from the Play Team.’
More Than Just Medical Care
For over a decade, Helen & Douglas House has been an important part of Nathan’s life, offering more than just medical care. We have provided a place where Nathan can truly be himself, surrounded by a community that understands and supports him and his family. Nathan’s journey highlights the impact of long-term care and the vital role of community support for families managing complex medical needs.