Everything started with Nella.
Nella was born a healthy and unusually strong baby in August 2013. Just 11 hours after she came into the world, she was lifting her head, and she received a perfect appearance, pulse, grimace, activity and respiration (Apgar) score. Her parents, Grace and Baron Grutter of Kansas City, were ecstatic.
But Grace Grutter noticed that at 6 weeks old, Nella wasn’t kicking her round little legs as much. At 8 weeks, she wasn’t able to lift up her head anymore. Friends and family assured Grutter that it was just because Nella was chubby, that she had nothing to worry about.
At 11 weeks, Grutter had had enough. She knew something was wrong and followed her instinct to take Nella to a doctor. Then, the terrible news: Their baby girl had severe Type 1 spinal muscular atrophy. Her ailment was untreatable and incurable, and her muscular strength would deteriorate with time.
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Grutter shared her story and updates on a “Prayers for Nella” Facebook page. That page captured the eye and heart of Philadelphia resident and new mom Kristin Estok.
“I really felt this extreme sadness for her family, just trying to put myself in their shoes, wrap my mind about what that’d be like,” Estok said. “As a mother who had a new baby, just thinking about how that would rock my world. You don’t realize how much you’re going to love your child, then to imagine you were told you have a limited amount of time with them.”
So Estok reached out to Liberty photographer Jessica Santo, a wedding photographer Estok had met at a friend’s ceremony. Estok also contacted a friend from graduate school, Arkansas resident Brittan Sanders.
Soon after, Go Shout Love was born.
Every month since last June, Go Shout Love has sponsored a new child with a rare illness. Each month, an Etsy-like auction is held on Instagram, put together by Santo. Vendors and individuals donate their goods and services, from handmade string art signs to photography sessions to batches of cookies. One hundred percent of the Instagram auction proceeds go to the family of the month.
“It’s incredible to see these auctions because people don’t do it to buy the item,” Santo said. “They aren’t shopping for themselves. They do it because they realize, ‘Oh hey, I can get this cute little canvas and donate to this family.’”
During a child’s month with Go Shout Love, Sanders, a graphic designer, creates custom T-shirts tailored to the child. With each shirt sold, the family receives 60 percent of the proceeds; the rest is used to run Go Shout Love. Sanders said she spends hours researching the families on Facebook and through their blog posts and even uses Skype to chat with them and get to know the child, so the shirt will fit his or her personality.
“My absolute favorite part of my job is designing the shirts and talking to families about why they’re designed this way,” Sanders said. “That’s always my favorite moment because families respond back and say something like, ‘If I could put my daughter on a shirt this would be it.’”
Children of all illnesses and conditions can be nominated for Go Shout Love, up to age 18. Santo said selections are generally based on number of nominations and the need of the child.
As a for-profit company, Go Shout Love simply gives the funds raised to the families, no questions asked about how it is spent.
“We don’t expect them to do anything with it; we don’t ask them what they do with it,” Santo said. “It’s just there to lessen the load for them. If they don’t pay their medical bills with it, that’s fine. Sometimes they just need a break.”
Nella’s mom said the donations were greatly appreciated, but she got something even better from the experience. Nella’s story was featured in December 2014.
“The money helped, of course, but most important is the community it creates for all these families,” Grutter said. “It’s the ability to connect to other moms with kids who have special needs or are terminally ill. If you have a bad day, they get it. Other moms might not.”
The three women have all said they think the community that Go Shout Love creates could be just as valuable, if not more so, than the money donated to the families.
“The people that they bring together, it’s like they’ve created a family for us to gather together and help each other out and support each other when we’re having troubles,” said Allison Jacobsen, whose son Silas was Go Shout Love’s June 2014 featured child. “The families they’ve featured have just become close and love each other’s kids and families as well.”
The three founders have been able to connect with the families and with one another. They’ve traveled to meet the families they’ve helped, and all three finally met for the first time in person last month.
Despite their distance, they have all become extremely close. Estok said that each woman brings her own skill set and personality to the table. Sanders, Estok said, is the artsiest of the group and brings invaluable creativity. Santo is their source of positivity and radiant energy. Estok said she is the realistic, focused and determined side of the organization.
“We’re all so goofy and weird, and we just have a blast together even though we’re hundred of miles apart,” Estok said. “I have a lot of fun seeing Brittan and Jessica light up for this. It lights me up because we’ve created this thing they just want to live for.”
Of the 13 kids who have been featured on Go Shout Love, two have died.
“You just have to constantly remind yourself that what you’re doing is bringing joy to them,” Santo said. “All of our kids don’t know any different — this is their life, and we’re trying to bring light to it and just help these families.”
Estok said that she knows they are doing something worthwhile.
Since starting last June, Estok said, their membership has tripled, and instead of seeking out donors for their Instagram auction, vendors and artists seek them out. According to the website, $115,000 has been raised.
“There have been many tears from all of us,” Estok said. “It’s difficult. But the positives and the benefits of it completely surpass the negatives, make it worth it. The grief and sadness make us more determined to fight for these families and fight for awareness.”
Follow Go Shout Love on Instagram and Twitter at @goshoutlove; or the auction at @goshoutloveauction. The group is also on Facebook.