Quilts for children with Spinal Muscular Atrophy

Over 1200 hand-made quilts made by one amazing Grandma

Quilts Grid Teaser 01

Cindy Bobolz creating one of her signature quilts. Each sent to a child with SMA, through Cure SMA

It's not everyday

you find out your only grandchild has a terminal illness, but that's what happened to Cindy Bobolz. Cindy's granddaughter Nora was diagnosed with Type-1 SMA at 7 months old. For many this is where the story ends, because children with Type-1 SMA generally don't live very long - 2-3 years usually. Cindy lives in Montana in a tiny unheard of town called Townsend, which is nearly 2000 miles from Nora's home in Knoxville, TN. This distance didn't stop Nora's diagnosis from impacting Cindy's life. So, she began to search for a way she could help Nora.

Cindy was an avid quilter

and began by making a few quilts for Nora. She would also make specialized pillows and positioning pads to help Nora play and be more comfortable. Other families with SMA children often gave Cindy new idea for projects that could help Nora and Cindy grew attached to these other SMA children. As people saw these creations, word spread, and before long Cindy found herself very busy.
Fight SMA
Cindy then contacted

CureSMA

and offered to make the quilts for SMA children. They got behind her efforts by providing the enormous amounts of fabric it takes, and Cindy gives her time, energy, and experience. In the last few years, they have created over 1200 quilts. Each is distributed by CureSMA in newly diagnosed support packages. Each quilt that goes out contains the following message:
Hope this brings you joy. In honor of my granddaughter, Nora, who also as SMA. goodentree.com
- Montana Grandma
How to create over 1200 quilts

How to create over 1200 quilts

"I have the quilt-making down to quite a science after making so many." says Cindy. "It takes me about 2 to 2½ hours to make each quilt from start to finish. But I don’t make them one a time."

First, Cindy cuts all the fabric for all the quilts. Since they’re baby quilts, they’re smaller than a standard quilt (about 40 inches square) They are either a solid piece of fabric or pieced rows of squares for the top rather than complicated pattern blocks that you often see on larger quilts. The top, a layer of batting, and a flannel bottom are loosely quilted together. Quilting means to sew a pattern into the body of the quilt (rather than just attaching the top and bottom at the edges), and they're loosely quilted to keep them puffy.

The bright colors and puffy texture are key in baby quilts because it's more engaging and stimulating to children's senses to see and touch the colors and texture. Once each pile of quilts is assembled, Cindy finishes by putting the binding (edge) on all of them. She seals each one in a plastic bag, boxes them up and takes them to the local hardware store where UPS picks them up. She stays on-track by devoting part of each day for a week every month to making them. For most of us, sewing a quilt is a project that stretches over many months, but Cindy has been sewing for so long with her Bernina and, before that, her trusty Singer, that it is second nature to her.

Cindy told me, "I send 12 quilts a month to CURE SMA. Sometimes I throw in an extra one - using up scraps." So twelve a month for a year is 144. Multiply 144 a year by the number of years since Nora was diagnosed, and it's over 1200. Up until two years ago, she sent 16 quilts a month, but it worked better for CURE SMA to receive 12 at a time.

The best part, Cindy is still going strong, creating quilt after quilt. Cindy will turn 72 next year, but as her children know, she always has to have something to keep her busy and out of trouble.

About Montana Grandma & Why She Sews

Cindy has been sewing since she was a child and winning 4-H contests since she was a teenager. She has always sewn most of her own clothes, and taught sewing and did alterations at various points in her working life. “When I was growing up, all the women in my family sewed, and I have a lot of memories of threading needles for my Aunt Ella when I visited because she was still quilting by hand even though she was too blind to thread the needles anymore. Sewing is in my genes.” Cindy has always been an avid quilter, and she often told her children that they had to get married and have grandchildren because she was running out of people to make quilts for. Little did she know that she’d be given the opportunity to sew for so many.

"I cannot cure Nora, but doing this has given me a way to fight against feeling powerless."

“You have no idea how much it means to me to make quilts for all the newly-diagnosed SMA families through CURE SMA,” said Cindy. “Our family was so frightened and heartbroken when Nora was diagnosed, and we felt so alone. But, when we were connected to CURE SMA, we found that there were so many generous people out there who knew our pain and were ready to extend help.” Cindy has become known to many in the SMA community through her efforts, and she said that finding other families like the Strongs and the Lunts has meant so much. “I wanted to be at least a tiny part in reaching out to SMA families to know that they, too, are not alone. I wanted them to know that there are many people out there who care about their families and the struggles they are facing, and the quilts are my way of paying it forward for all those that helped our family when we were told of Nora’s diagnosis.”

One of the hardest things as a family member of someone with SMA is feeling powerless." Cindy told me, “It’s so hard to find meaningful ways to help fight against this disease that takes so much away. I’m so grateful to CURE SMA for allowing me to make these quilts, because it gives me a way to feel like I’m helping to fight back against this disease. I cannot cure Nora, but doing this has given me a way to fight against feeling powerless.” Cindy also finds it an important way to honor Nora’s legacy, by creating this interconnected web of generosity between all those families that have the bond of SMA. Nora may not survive SMA, but her legacy will always survive. It’s the reason that Cindy sews all the quilts herself rather than accepting help from neighbors. “If someone else makes the quilts, it isn’t the same for me. I may be far away from Nora geographically, but this is my way of connecting to her and of sending my love to her and all the other families.”

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