Community Spotlight: Paula Lavigne and Chris Arnold

Thirteen years ago, Paula Lavigne and Chris Arnold’s adorable son, Wyatt, entered the world on July 9, 2010. While Paula and Chris could tell shortly after birth that Wyatt was struggling, it took what felt like a long time in Wyatt’s short life for him to be diagnosed with SMA. Wyatt finally received his diagnosis in October 2010, and he passed away on December 12, 2010, shortly after turning five months old.

Their son’s diagnosis introduced Paul and Chris to our SMA community, and while they were devastated by the loss of their son, our powerful SMA community has brought them some comfort in their journey. Paula and Chris have been able to build a compassionate, caring, dedicated, and loyal SMA village, consisting of what are now sure to be lifelong friends.

Cure SMA has served as a key component of Paula and Chris’ village. They first learned about the organization after Wyatt’s diagnosis. Through Cure SMA, they connected with other SMA-affected families in their state, were provided with provided information on SMA and received helpful support materials. To this day, they vividly remember the giant box they received in the mail with loads of items to help them with feeding, sleeping, and mobility accommodations for Wyatt, along with toys designed for SMA-affected infants.

“The generosity from Cure SMA was unbelievable. But more than that, the knowledge that we weren’t alone in this really kept us going in a very dark time.” – Paula Lavigne and Chris Arnold

Paula and Chris remain engaged with our SMA community and continue to donate to Cure SMA to help accelerate progress towards a cure. As a journalist for ESPN, Paula has been able to promote SMA awareness to a larger audience. Paula and Chris are committed to finding a cure, supporting families like theirs, and giving Wyatt a way to live on and have a lasting impact. Although sometimes it feels a little bittersweet, because as thrilled as they are about the treatment options available, those options weren’t there for Wyatt, leading them to wonder what life would be like today if Wyatt had been able to be the beneficiary of today’s advances in SMA treatments and care.

But they also feel pride, because together with Cure SMA they have helped add SMA to newborn screening panels and create effective and innovative treatments, all while supporting the day-to-day challenges of both newly diagnosed and long-time SMA patients. They see videos of children who had Wyatt’s same diagnosis as an infant who are holding their heads up, sitting independently, and in some cases, walking—all things they consider near miraculous.

Paula and Chris say they are excited about the future of SMA, and the work being done with gene research, including how methods to cure SMA could lead to innovative ways to cure other genetic diseases. That also factors into why they tell people to support Cure SMA, because breakthroughs here—where they seem so close—could have a ripple effect in rare disease, and overall medical, research.

A year and a half after Wyatt passed, Paula gave birth to twins who have added joy to Paula and Chris’ home and hearts. Their expanded family continues to include daily reminders of Wyatt, and the twins have been told stories about their brother since the day they were born. In addition to these stories, Paula, Chris, and the twins have made acting on Wyatt’s behalf even more important. They testified before their state legislature to add SMA to the newborn screening panel in Nebraska, and Wyatt’s younger brother and sister got to watch as their father told senators about Wyatt and his experience with SMA. When the Legislation passed, the entire family celebrated. Through Wyatt, his siblings are fighting for change, learning compassion, and ready to take on the world.

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