Today is an exciting day for Alexander because it’s the day he gets to go to Matthew’s House. Alexander loves it here. He gets to hang out with friends and have lots of conversation. He plays tennis on the Wii or goes for walks with staff. He loves his own time, listening to music on his headphones.
“We really enjoy having Alexander here,” says Maggie Olesen, the assistant manager at Matthew’s House. “He has such a great sense of humour and it’s so fun to have conversations with him.”
For Christel and Alan, Alexander’s parents, having Matthew’s House as a resource is a gift. It means that they can do things with each other or with Alexander’s siblings and not have to worry about his care. Not only that, they know that the staff truly care about their son, which gives them peace of mind.
“Matthew’s House has been life-changing,” Christel says.
Alexander lives with a very rare disorder – so rare it doesn’t yet have a name and is referred to as KIF1A. It is a genetic mutation that causes a progressive degenerative neurological condition. This affects most of Alexander’s major bodily functions. He is considered legally blind. He has no feeling in his extremities and has mobility challenges so he uses a wheelchair to get around. Alexander is one of only 6 people in Canada diagnosed with the disorder and is one of only 100 people in the world living with it.
This puts him in rare company but to his family, Alexander is rare and unique because he is a much loved son and brother who simply needs a lot of support. They too enjoy his sense of humour and his deep love for his family. Christel and Alan also appreciate the positive impact that he has had on his siblings.
“Growing up with a brother who has disabilities has made them sensitive to others who also have special needs,” Christel says.
Alexander’s sisters help their parents provide the care that he needs when he’s at home (his older brother is married) and when the family needs a break, they turn to Matthew’s House.
Matthew’s House supports families by providing quality care in a homelike environment to children who have complex care needs. Staff provide a safe and loving environment, giving parents the peace of mind they need so that they can get the rest they deserve.
While Alexander enjoys his time at Matthew’s House. Christel and Alan take that opportunity to go away for a weekend together, spend time with their other children, or just really rest, knowing that Alexander is well cared for.
“It gives all of us a break,” Alan says, “and it’s so great for us to not have to worry about his care.”
It’s important to them that Alexander also enjoys going. His parents say that it’s given him a measure of independence because it’s an experience away from his family. He loves the one-to-one attention he receives.
“We can’t even express how much he loves Matthew’s House,” Christel says. “He’ll come home from a visit and ask ‘when can I go back?’”
The quality care that Alexander and other children and youth receive at Matthew’s House is costly. Matthew’s House is funded through a blended partnership between government and private donors. Without this support, this resource would not be available for families who need it most. Alan and Christel are grateful for a generous community and want supporters to know that it means a great deal to them.
“Matthew’s House makes a huge difference to our whole family,” Christel says. “It really has made a difference.”