Nicolas Nation is all about providing the best chance at a good life for a Maple Ridge toddler fighting a life-threatening disease.
The nation will rally this Sunday at the family home of Nicolas’ parents, Rolf Schwuchow and Petra Fellinger, to go over all the work that needs to be done to help Nicolas thrive.
Nicolas was diagnosed with spinal muscular atrophy type 1. Children with this disease are typically never able to lift their heads, walk or sit unsupported.
“He is completely dependent,” said his mother. “Something as simple as scratching an itchy nose, reaching for a toy well within his reach requires help from someone else.”
Children with SMA Type 1 suffer from system-wide muscle wasting that can affect their ability to breath, and cause other health complications. It is the most common genetic cause of infant death, and many die before their first birthday.
At the same time, each SMA patient is different, and Schwuchow and Fellinger have learned about others who grow up and attend university and get married. His parents hope that promising new treatments develop into a cure.
Their son is turning three in October, and with regular water therapy, motion therapy and other treatment, he has grown into a happy toddler. He has parents who are determined to do everything they can for him.
“You realize you can have an impact on this diagnosis,” said Schwuchow.
“We don’t know what tomorrow holds. None of us do. All we can do is give him a quality of life.”
Fellinger said her son is starting to propel himself in the water – the environment where he enjoys freedom of movement. He can give himself a snack, and he’s training to use a power chair.
“He’s the happiest kid. He’s always singing,” she said.
“He’s intelligent, he’s a flirt and he’s an absolute joy,” said his dad.
Nicolas’ critical water therapy at a public pool brings with it germs and a risk of Nicolas contracting illness. The flu or a cold can be far more serious for him. The family was looking at a home pool installation and other modifications to their house, in order for Nicolas to have the best home environment they could afford. When they spoke with a builder about the renovations they could afford, and the plans ballooned.
Andrea Cihelka, president of Gara Construction, is leading Nicolas Nation in the construction project, dubbed an “extreme makeover.”
She is donating her time, and is encouraging other local tradespeople to do the same.
Cihelka started off looking at the house for a small renovation, but once she saw Nicolas, and learned about the entire situation, she wanted to do more.
“I have three sons myself. They’re all very active in sports and living quote-unquote normal lives,” she said.
“I looked at little Nicolas and it kind of broke my heart. He’s a delight. He’s just the sweetest little guy.”
The family needs a sit-to-stand power chair valued at $30,000, and an above-ground pool for daily water therapy.
They will renovate the house with ramps, lifts, wheelchair accessible rooms and create a sanctuary where Nicolas can wheel himself around, and get the treatments he needs.
“We’re planning on a lifetime with him,” said his father. With the drawings finalized, the energy and excitement of Nicolas Nation is growing, but the group is still in need of more local businesses and skilled volunteers to make their plans a reality, said Cihelka. Assistance is needed in the areas of excavation, demolition, framing, concrete, insulation, electrical, plumbing, flooring, roofing, millwork, drywall, painting, interior and exterior finishing, gutters, sprinklers, siding and landscaping.
On Sunday, they will host an open house and barbecue from 1-4 p.m., and guests can look at the drawings and determine whether they would like to be involved.
“We’ve had some amazing people come forward,” said Schwuchow.
“It’s a hard thing to ask for help. But we’ve had to do whatever we can to help our boy.”
So far Nicolas Nation has raised $52,000 of their goal of $300,000.
“We’re overwhelmed by the generosity and the kindness of the community,” said Schwuchow.
“There’s still a big thing to accomplish here.”
Anyone interested in attending Sunday’s open house should e-mail Cihelka at email@example.com or firstname.lastname@example.org. For more about the campaign visit A Boy Named Nicolas on Facebook or www.aboynamednicolas.ca.