Excavation work began Friday on a project to bring some freedom to a Brantford boy with a rare genetic disorder robbing him of his mobility.
Mounds of dirt are piled high in front of Mark and Michelle Watson’s Albert Avenue home, where a local company will construct an addition that includes a ramp, separate entrance and a large wheelchair-accessible bedroom and bathroom for Brodie, who turns 10 next month.
“He’s so excited,” Michelle said of her son.
“He wants his own mailbox. He has been asking us if we will visit him and still cook his meals.”
Brodie has a version of hypomyelinating leukodystrophy (Type 4) so rare that he may be the only person in the world diagnosed with it.
So, although the experts know most kids with hypomyelinating leukodystrophy don’t live past their teens, no one can predict what the future for Brodie.
Michelle has noticed a big change in her son over the past year. Once able to walk unaided, he now requires a walker or wheelchair. He’s struggling with his speech. He shoots quickly.
“He doesn’t wake up with a full tank,” she said.
The Watsons’ four-level side-split home is full of stairs. Brodie must crawl to his upper-floor bedroom and the bathroom. He needs a walker with a larger span but it doesn’t fit in their living room.
“He wants to be independent but it’s getting scary,” said Michelle. “We don’t want him to fall and hit the back of his head.”
Brodie soon will need a power wheelchair and an accessible vehicle to get him around.
Michelle and Mark both work full-time, she as a unit clerk at Brantford General Hospital and he in the trades. But the renovation to their home – estimated to cost $200,000 — would have been out of reach for the couple without the generosity of family, friends and strangers captivated by Brodie’s sweet nature – his mom says he wakes up singing every morning – and their willingness to help.
Brodie’s great-aunt, Sharon Maloney of Brantford, set up a Go Fund Me to kickstart the house renovation. To date, the online fundraiser has reached about $45,500 of its $100,000 goal.
Michelle’s co-workers at BGH held a recent fundraiser at the Gunners Club that brought in $14,200. A Michelle went to elementary school with friend held a bottle drive and raised $600. Their Epicure rep helped raise $1,300. Brodie’s classmates at St. Leo’s School, where he’s in Grade 6, collected toonies, and various people have donated their services.
A stranger showed up at their front door with $10,000 in cash.
Total donations have reached about $90,000.
It’s all been overwhelming for the couple, who have taken out a second mortgage on their house to help cover costs. To Brodie’s dismay, the family sold their tent trailer to pay for the architectural drawings for the reno.
“We don’t even know how to begin saying thank you,” said Michelle. “We want people to know that every penny is going into the renovation.”
But without a single other person known to share Brodie’s specific diagnosis, Michelle said coping with his challenges can be isolating.
“We have no idea what’s going to happen,” she said.
“He’s starting to talk about it a lot. The kids he has grown up with are doing more things now that he can’t. There are some really hard days.”
To contribute to Brodie’s home addition, go to bit.ly/gofundme-Brodie.