The quest to help two-and-a-half year-old Nicolas Schwuchow and his family build a better life as the young child deals with the debilitating effects of spinal muscular atrophy continued over the weekend at the Maple Ridge-Pitt Meadows Home Show.
Friends and volunteers set up shop at Planet Ice as the family tries to raise the funds needed for the Maple Ridge toddler to lead as normal as life as possible.
Two years ago, Nicolas was diagnosed with Type 1 SMA, a motor neuron disease that affects voluntary muscle movement that limits his mobility, as well as swallowing and breathing.
Volunteer and fundraising trustee Claire Gullmes said the family is looking to purchase a van with lift-access that will allow Nicolas to move about the community. She said to date, more than $50,000 has been raised to help with medical bills and other equipment for his ongoing treatment.
But the cost of retro-fitting a van to accommodate the new power chair will cost upwards of $30,000, she said.
“We just we need a guardian angel to get this done,” said Gullmes.
Rolf Schwuchow, Nicolas’s father, said the family has received incredible support from volunteers of the group called Nicolas Nation. They been the driving force behind the fundraising efforts.
Asking for help is a difficult thing to do, but without assistance from organizations and the community, there is no way “we would be where we are today,” said Rolf.
Nicolas’ mother Petra is overwhelmed by the community support.
“We only hope that everyone knows how grateful we are for their contributions,” she said. “SMA is the No. 1 genetic killer of children under the age of two, so we feel so grateful to have him in our life today and we are prepared and determined to do whatever it takes to have him with us for many years to come.”
Part of that plan is to have their house modified to accommodate his new chair so he can be mobile and allow him access to the main floor of their basement entry home.
Gullmes said initial estimates for the home renovation could reach as much as $300,000. The volunteer group has had numerous calls from local tradespeople willing to donate their services. It is also looking to suppliers for donations to help fund the project.
Gullmes said the family has been resilient over the past two years, considering the challenges they’ve faced since the initial diagnosis. She said while the disease affects Nicolas’ motor skills, it doesn’t change the fact that he’s a normal two-year-old mentally.
It’s getting more and more difficult as he gets older,” said Gullmes.
Petra said there is no downtime when it comes to her son’s care.
“He is completely dependent. Something as simple as scratching an itchy nose, reaching for a toy well within his reach requires help from someone else, whether he is strapped in his stroller, or laying down at night, every movement requires help.”
The family also faces another significant hurdle is the toddler’s care. Because he has trouble breathing and coughing, Nicolas’ exposure to germs has to be guarded carefully.
“This condition isolates us as a family and we find ourselves staying very close to home just to be safe,” said Petra.
“Our home is truly our sanctuary.”