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Layla Grace’s Legacy, How one family turned tragedy into hope for others

You’ve probably heard about her. Little Layla Grace Marsh touched many lives in the Cy-Fair area and beyond, her story reaching nationwide. In May of 2009, at just 18 months old, the youngest of the three Marsh children, Layla, was diagnosed with stage 4 neuroblastoma. Her parents knew they had a lengthy and scary journey ahead of them, and they took to Twitter, Facebook and blogging to keep their friends and family updated on the latest. What they didn’t know is that soon, they’d have the whole world’s attention and support.

According to the American Cancer Society, neuroblastoma is the most common cancer in infants and accounts for 650 new cases each year in the United States. There is only about a 30 percent survival rate. It is so severe that in about two of three cases, the disease has already spread (metastasized) to other parts of the body by the time it is diagnosed. Signs and symptoms of the disease vary, depending on the area affected. In Layla’s case, the massive tumor was in her abdomen, and her symptoms started as constipation. By the time they had found it, the tumor extended from above her left kidney, around her side, over her belly, and wrapped around her aorta. It was even in her bone marrow. The outcome did not look good. “Our sweet Layla went from normal, happy and healthy to lethargic, in pain, and skin and bones in a matter of a week and a half,” explains Shanna, Layla’s mom.

Dealing with Layla’s diagnosis wasn’t easy. Layla’s two older siblings didn’t quite understand, and the pressure on Shanna and Ryan, her dad, grew by the day. Their lives were consumed with doctor’s appointments, and they couldn’t plan for anything. The Marshes had a lot of friends in the area, and support for the family started to grow. So much so in fact that their Twitter account grew to over 40,000 followers and their two Facebook fan pages to over 100,000 fans combined, many of whom lived out of state and whom the Marshes didn’t even know. Among followers were many celebrities, including Ryan Seacrest, who called the Marshes to ask for an interview. The Cy-Fair community also came together to help the Marshes. Several local restaurants hosted “Layla Grace Nights” and proceeds went to the family. Businesses gave money for every purchase or Facebook fan, and numerous other community members and people from afar were touched by the story and wanted to help. Local radio and news stations featured Layla’s story. It seemed that everyone knew about little Layla Grace. “We’ve been overwhelmed by how supportive the community has been with prayers, meals, childcare, donations, etc.,” says Shanna. “They rallied together and helped us in our time of need.”

As Layla grew sicker, the Marshes didn’t put as much time into the blog or Twitter, didn’t respond to the media requests or phone calls, and just spent time with Layla. “At first we just wanted to get the word out about this horrible disease. But towards the end, we couldn’t think of taking her anywhere, even when Good Morning America wanted to do a feature on us,” explains Shanna. “We wanted to spend whatever time we would have left with our daughter, and so we stopped doing interviews.”

Layla Grace lost her battle with neuroblastoma on March 9, 2010. What happened next wasn’t what you’d expect though. Her family was devastated, of course, but they were also empowered to hold true to Layla’s legacy. The family had a celebration of life for Layla, and people who the Marshes didn’t even know showed up. One thousand pink and purple balloons were released in her honor, and Matthew West, a Christian artist, flew in from Tennessee to sing at the celebration. The healing process hasn’t been easy for anyone, and this story has touched nearly everyone. “It’s a day-to-day, minute-to-minute process. There’s no moving on. Layla will always be part of our lives,” explains Shanna. “We’ll always talk about her, have pictures of her around. We choose to heal by doing good with what she started.”

And that’s exactly what the Marshes have done. Ryan and Shanna knew they wanted to give back to all the people who stepped up to support them, and they knew they wanted to help others who were going through similar situations. That’s when the idea for the Layla Grace Children’s Cancer Research Foundation came about. The foundation, created by Layla’s parents, is a 501©(3) nonprofit organization to raise awareness for neuroblastoma. But it’s more than just that. “We want to help other families going through this,” explains Shanna. “We’ve got big ideas and we’re excited to be able to pay it forward.” Shanna and Ryan hope to help other families with meals, parking vouchers and gifts for the children who are battling cancer. They also hope to raise funds to help find other ways to treat neuroblastoma. “What they did to Layla’s body, all the chemo, the bone marrow transplant, it didn’t work. Something new needs to be done,” says Shanna.

Their first fundraising event, A Taste of Cy-Fair, is coming up on June 13. The event will be held at Northwest Forest Conference Center from noon-4 p.m. and feature the best restaurants and businesses in the area. While it does cost a small fee to get in, samples of food and shopping opportunities, plus the fact that the proceeds go to a great cause—the newly established foundation—make it worth it. “Layla did more in her two years than most people do in 100,” explains Shanna.

To learn more about Layla’s story, how you can donate to the family or the foundation, or about the event, visit www.LaylaGrace.org.

Dad reading to Layla

Mom holding Layla

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