Housing help for hospice family
19 February 2018
However, now the family has moved to Oswestry they say life has changed for the better as the hospice is practically on their doorstep. Ava, along with her parents – Emma and George Davies, and her six-year-old brother Luca moved into a newly built home thanks to The Wrekin Housing Trust. The house is part of a development, which has been built on the site of the former Richard Burbidge Stair Manufacturing business.
“For years I’ve said I wanted us to move, but it seemed like it would be a big upheaval,” said Emma. “However, the move has been fantastic. The Wrekin Housing Trust allocated us a three bedroom property in Cornovii Gardens and everything about the house is wonderful. We have a lovely flat back garden that Ava can access, we can also park right at the front of the property, which means we can get her in and out of the house more easily. Even the front door is wider to accommodate her wheelchair. I can’t sing their praises enough - we definitely made the right move.”
Ava has Down’s syndrome with a complex cardiac condition and she breathes through a tracheostomy in her neck. She also has a wide cleft palate, which means there is no roof to her mouth, so she is fed by a tube into her stomach. “Ava can’t walk or speak and her level of understanding is the same as a toddler’s, communication is very limited and is mainly through Makaton, which is a form of communication using signs and symbols,” said Emma, who is a full time carer for her daughter along with her husband. “When she had a scan there was fluid around her brain, which is stopping it from developing.
“Ava has been going to Hope House for almost seven years. A lot of people think that you go to a hospice to die but they give you support throughout the child’s life. Ava’s care doesn’t change over 24 hours – it is hard and means we suffer from sleep deprivation. Ava stays in Hope house 12 nights a year and benefits greatly from the day care that they are able to offer her now that we live locally, which allows us to spend quality time with Luca. It is hard for Luca because Ava’s condition means we can’t do general family activities and so these breaks mean Luca can spend time doing the things he wants to do.”
Hope House also provide sibling support where they take children like Luca out on trips and visit him at his school. Emma said that expecting the hospice nurses to come out to Colwyn Bay seemed too much, and they are pleased they were able to move house so easily. “When you find yourself in this situation and you don’t have a support network around you it is easy to feel isolated,” she said. “Hope House is like our family and it is fantastic to now have them just five minutes around the corner, we can’t thank The Wrekin Housing Trust enough.”