Christian and his family come to the hospice to spend quality time together.
Find out more about how we support Christian and his family.
Christian's mum talks more about the help and support we give her family. She said: “Some people think hospices are all doom and gloom. They’re wrong; CHAS is about life. They’ve helped us find joy and happiness despite our troubles”.
“Christian was born with DOORS Syndrome, a rare genetic disorder recognized shortly after birth. This means he is deaf, partially sighted, and uses a wheelchair. He suffers from acute seizures, and has lost the ability to swallow. He wasn’t expected to live beyond the first year of his life."
"My family lives in Chile, my husband’s family live in Canada and the United States. We were by ourselves, which was really tough. It was hard for one of us to spend long periods of time at the hospital with Christian, as this then split the family, with our other children at home. The first time we came to Rachel House, I remember simply being able to sit down and have a cup of coffee, without constantly worrying about Christian. I could just relax, safe in the knowledge that my other children Sebastian and Santiago are being looked after by the activities team. The support provided to the boys is also invaluable – in addition to the fun and activities, CHAS also provide emotional support; listening to and supporting them their concerns or worries about Christian’s health."
"Looking after Christian places an enormous strain on the whole family. He needs care all day and, when his seizures are acute, all night as well. Then of course there is all the usual housework to be done, cleaning, cooking, washing … and on top of everything it’s so important to make time for our two other sons as well. Without CHAS, it would simply be impossible. For me, coming to Rachel House is a holiday, as we can all spend quality time together."
"When it comes to the end of life, I know that we’re not alone, and that CHAS will help us prepare for that moment. As a person from overseas, I don’t know funeral arrangements here or how they work, so I know if I talk with someone from CHAS they will help me to do everything. It is a peace of mind to know we don’t have to do everything by ourselves; that we have the help."