As the proverb goes, it takes a village to raise a child — or in the case of two-year-old Nicolas Schwuchow — a ‘nation.’
The vibrant, smart Maple Ridge toddler has Spinal Muscular Atrophy (SMA) Type 1, which is a terminal and degenerative disease that causes weakness and wasting of muscles in infants and children.
Diagnosed at eight months old, Nicolas’s parents Rolf Schwuchow and Petra Fellinger went through a really hard and dark time.
“When [SMA] presents so young, it usually progresses rapidly,” Petra told Global News.“Life just stopped for us and we had to take time to assess and figure it out.”
It took the couple quite a few months to come out of their emotional fog and wrap their head around their son’s condition.
According to the Gwendolyn Strong Foundation, the disease is caused by an abnormal or missing gene known as the survival motor neuron gene (SMN1), which is responsible for the production of a protein essential to motor neurons. The disease eventually impacts every muscle in the body, hindering the ability to walk, stand, sit, eat, breathe and swallow.
Nicolas cannot walk or stand but through therapy he has been able to beat the odds by getting stronger and survive past his second birthday.
For Rolf, it’s the “daily successes” that keep the family going. That, and the support of a huge community standing in their son’s corner.
Roughly a year after Nicolas’s diagnosis many friends came forward and created the ‘A Boy Named Nicolas‘ fundraising campaign to help the family provide for his needs. The campaign has grown so much over the past three months that it’s now called ‘Nicolas Nation.’
The money raised will be used for renovations, like an elevator, larger doors and a bigger bathroom, to accommodate Nicolas’s needs, as well as pay for his on-going therapy (physiotherapy, hydrotherapy, daily massage and range of motion exercises).
To date the nation has raised just over $18,000 of their $200,000 goal.
Rolf says the renovations will make their home more accessible for his son now, and as he gets older.
“We used to have a lot of tears of fear and not knowing,” Rolf says.
“And nowadays we have a lot of tears of amazement.”
Petra echoes her husband’s sentiment about what the support has meant to them, their four-year-old daughter Isabelle and Nicolas.
“The amount of people who have come forward is so overwhelming,” an emotional Petra told Global News.
“I can’t even put words to it. I’m so thankful to everyone on our team and in the community. We have the best community.”