Local family praise lifeline hospice services this Children’s Hospice Week
Elaine’s son, Aaron, aged 9, was born with a double hole in the heart and due to this, he has a range of complexities which affects his health.
Aaron, a bubbly, happy and sociable boy, has a pace maker and a micro valve which help him to have a good quality of life
Aaron has been using our Children and Young Adults Service for seven years. The four nights that Aaron is at the Hospice every month is the only time Elaine and husband Alan get an overnight break from caring for their son. Elaine said:
“The last 15 months have been a horrific time, but they have been for everyone. Last year because of Coronavirus we had to shield, which meant for a few months we weren’t able to access our usual support networks, which includes St Oswald’s Hospice and Aaron’s school. This meant that I had to work from home and care for Aaron, which was practically impossible.
“Not only from a practical point of view was it hard but we also all missed the social element of our support. Due to his complex needs, St Oswald’s Hospice is the only place that can care for Aaron overnight, and we also couldn’t see friends who can help with other things like pushing Aaron’s pram, and giving him cuddles!
“Aaron loves being around people and being the centre of attention so he really missed not having other social contact for months and months last year.”
Aaron has complex health needs and learning difficulties due to his condition, Elaine explains more about what this means day to day:
“His condition means that he needs to be on a ventilator at night, he tires easily and last year he was diagnosed with epilepsy. Even though Aaron has complex needs he’s stable and he’s never still! He can now walk a few steps with support from someone else, and we hope one day he’ll be able to walk unaided. He’s also beginning to say a lot more words and uses Makaton to sign.”
Talking about the support from our service, Elaine ended:
“As the care is led by nurses at St Oswald’s I feel safe leaving him for the four nights a month he is in the Hospice. He has been going to the Hospice for seven years and there is nowhere else that he could go. The staff know him so well, and they know all his wants and needs, he’s just as well looked after there as he would be at home.
“The Hospice is so good for Aaron and he adores the staff. Because he loves singing and doing the actions of songs, he particularly loves the music therapist. He also really enjoys the sensory room, arts and crafts, and anything sociable.
“Although he gets a lot out of his visits, when Aaron comes to St Oswald’s my husband Alan and I get a lot out of it too – we get us time. We love the Hospice and we really don’t know what we’d do without their support.”