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Nick’s living with a complex medical condition called Spastic Quadriplegic Cerebral Palsy, a condition he’s had from birth due to brain damage when he was just five days old

This Children’s Hospice Week, Nick has spoken about how the care he receives from us benefits both him and his family, and how his mental health deteriorated when he was unable to access our service during the peak of the Coronavirus pandemic last year.

Nick said:

“During the peak of the pandemic, I had to shield which meant I wasn’t able to come to St Oswald’s Hospice for my regular stays, which negatively impacted on my mental health. The short breaks aren’t just important for the young person, but their family too. I live with my Mam and Dad, and my Mam is my main carer, so when I’m in the Hospice we all get a break.”

Talking about his medical condition, Spastic Quadriplegic Cerebral Palsy, Nick continued:

“I was really poorly when I was born and at five days old I suffered brain damage from over ventilation. Because of my condition, I have a learning disability, which isn’t always noticeable when people first meet me as I have good communication, but it does mean that I struggle to communicate when I need help, and I rely on people asking me if I’m OK.

“There’s other complications with cerebral palsy; I need a gastrostomy tube to make sure I get enough water throughout the day, and I have a colostomy bag.

“I also experience sleep apnoea, which means that I sometimes stop breathing when I sleep so I need a ventilator at night time, and sometimes during the day too. Because the care at St Oswald’s Hospice is so specialised they’re able to help care for all of my needs.”

Nick’s Cerebral Palsy means that he needs to use a wheelchair and has limited movement. He relies heavily on technology which he says has had a life changing impact:

“Technology is so useful to me. My watch has a voiceover function which is essential for me because I’m visually impaired and I’m unable to read due to brain damage. The watch allows me to send and receive text messages so I can keep in touch with my friends and family.”

As well as communication, technology is helping Nick to achieve something he never thought possible – to be able to walk using specialist equipment called Innowalk. Innowalk is a robotic rehabilitation trainer which allows people with moderate to severe physical disabilities to stand and move. Nick will be using his Innowalk throughout the month of July to take part in our 100km fundraising challenge, to thank our staff and volunteers for all they do.

Nick ended:

“The care at St Oswald’s Hospice is outstanding, the staff are an excellent team who are dedicated to their job and take in to account everyone’s needs. As well as the care, I really enjoy socialising with them and other young adults who come for respite.

“As soon as people hear the word hospice, they immediately think about quite severe illness but St Oswald’s does a really good job of not focussing on that. It makes me feel sad that when I turn 25 I won’t be able to come to the Hospice, as their Children and Young Adult Service is only funded for people up that age. If there’s young people and families in a similar position and fit the criteria for hospices, I’d say go for it!”