Just like any other child his age, Xavier goes to school, has friends and loves outdoor activities. He enjoys listening to music, watching television and has a passionate interest in bikes, cars and anything with wheels. He always looks forward to going for a ride on his custom-made tricycle designed especially for him with the help of Fund for Good.
Xavier lives in Milton with his foster parents, Alex and Margaret Gillanders, who are both retired. It was at a family conference that the couple were asked, alongside other members, if they’d consider fostering Xavier. The Gillanders volunteered. Alex says, “Well, we’ve got no huge responsibilities and a reasonable income. It couldn’t be too difficult to look after a child for a few years.”
Xavier lives with alternating hemiplegia of childhood. This was only confirmed recently by a Geneticist following a misdiagnosis of epilepsy a few years ago. Expending too much energy triggers a paralysis attack. This causes loss of function on either side of his body for a brief period. Over the years, identifying these triggers has helped the family manage his condition better.
“The school camp was going to get all the kids to take their bikes and do a lot of biking in central Otago, but Xavier has never managed to ride a bike. It’s quite a tricky thing to stand upright,” says Alex. This was when the family benefited most from having the trike, Xavier could sit in front, and Alex was able to take him on an exhilarating ride. When his friends and classmates were busy with other activities, like exercise or archery that Xavier couldn’t participate in, the family kept him engaged by taking him for bike rides.
“Fund for Good is really, really good and gives people a real life,” Margaret adds that they are very grateful to get the funding as it helped them free up some money to do other important things for Xavier such as making a home suitable for him in Dunedin.
Xavier’s Grandad Vinny visits often. This provides some respite allowing the Gillanders time to attend to important chores and the opportunity to engage with their newborn grandchild.
Xavier also receives support from Sarah, who works five days a week. When Sarah talks about him, she describes a close bond and special communication style between the two. She says, “He is the most engaging little boy once you get to know him. He’s got very good cognition and can understand everything you say to him.”
The trike has had a positive impact on Xavier’s life. When things aren’t going well, Alex takes him for a bike ride, and everything falls back into place. “We chase the seagulls, we go around, and it gets him out of the house. It’s hours and hours of escape from these four walls,” adds Alex.
If you have a passion like Xavier and would like to fuel it further, apply for Fund for Good.