Surprise home renovation for Gilpin family returning from USA experimental neurodegenerative treatment

Albany Vikings Sporting Club have been on the tools to help renovate the family home of Hollie Gilpin, ahead of the family’s return from the United States — where the nine-year-old has undergone experimental treatment for a rare neurodegenerative disorder. Hollie was diagnosed at six years old with a form of Batten disease, making her the only child in Australia with a rare and incurable form of early-onset dementia. When the family relocated to Albany from Karratha, Craig Gilpin reached out to friends for help renovate their new house. They had run out of time before having to travel back to the US for the experimental trial Hollie was undergoing. Mr Gilpin hoped for a helping hand but never expected the Albany Vikings and community to chip in their time and renovate their home while the family was away. The sporting club and qualified tradespeople banded together on May 26 for a busy bee, working to make the family’s new home accessible and ready for them to move in. They installed a new wheelchair ramp, shower taps, air-conditioning unit, and television, as well as unloading and setting up furniture and renovating the laundry to fit their appliances. Hollie’s mother Amanda Gilpin said the family’s ordeal began with “minor things” while Hollie was in kindergarten. “From there she got a little bit clumsy and we began wondering if it was autism, her eyesight, or her ears,” she said. “You would be talking to her at times and wonder is she not listening? Is she ignoring you? What was going on? “We ended up finding out about her absent seizures and said to the paediatrician that we need to go down the path of seizures.” That led the family to an abnormal EEG (a test for electrical activity in the brain) and then a highly abnormal MRI. “Then the genetic test was offered and that’s when we found out what was wrong,” Mrs Gilpin said. The genetic testing led to Hollie’s diagnosis of Batten disease at age six. Craig Gilpin said they never expected the amount of support the family has received, and that the “extraordinary” work done to their new home was a complete surprise. “Our journey hasn’t been great but the community spirit that we’ve seen here and in Karratha has been phenomenal, and it’s something I’ll never forget,” Mr Gilpin said. “We’ve been through some tough times but it’s been that little bit easier because we’ve had so many amazing people behind us, so we appreciate that so much.”