Sophie the Brave

Shelby Skiles had a hard time getting pregnant and a tough pregnancy. When baby Sophie was born, Shelby already knew she was a miracle and every moment with her was precious. Shelby taught third grade for Brownsboro ISD, but co-workers knew as passionate as she was about her students, her love for Sophie ran even deeper.

One day Sophie had trouble breathing so Shelby and her husband Jonathan took her to the doctor. Everyone thought it was probably just asthma. A short time later Shelby came home from a field trip and found Sophie struggling to breathe. The couple rushed her to the Tyler ER and from there doctors sent them by ambulance to Dallas Children's.

Sophie had a softball-sized tumor in her chest. At first, she seemed to respond to treatment, but then she relapsed. She was diagnosed in May and after that, the family went through months of horror. Shelby and Jonathan watched as doctors pumped their two-year-old full of poisons in an attempt to save her life.

Sophie Kay

Shelby shared some of it in photographs with family and friends. "I wanted to show what families actually go through," she said, "Not just cute bald kids smiling. I wanted to pull the blinders off. You don't want to show a kid with their mouth bleeding on TV, but if one kid is dying from cancer it's too many."

The aggressive chemo caused extensive brain damage. It was too strong for her tiny body, but not strong enough for her cancer. Sophie died on January 4 of this year.

Do More for Soph

Sophie headstone

A few weeks after she died, Shelby faced her birthday. She remembers thinking, "What is the point of everything she went through if nothing good comes from it?"

She didn't have the desire to start a nonprofit. She also knew people could make a difference more ways than just donating money. She challenged close family and friends to "Do More for Soph," to intentionally make a difference in Sophie's memory, especially on her birthday.

The response was overwhelming. People Shelby didn't know reported small and large things they'd done in Sophie's memory. Shelby and Jonathan received gifts and encouragement from anonymous givers.

People bought books at Barnes and Noble, wrote a note they were doing more for Sophie and donated them. They texted encouraging messages to people they knew were struggling. Friends handed out roses to strangers with a note about her life. Dallas and Tyler residents took doughnuts to nurses and wrote, "This is for Sophie."

Shelby helped a group of friends put together new parent bags with items to get them through the first horrific days of an extended hospital stay. She suggests items like hand sanitizer, pens, tissues, rolls of quarters for vending and travel-sized toiletries.

Be Brave Binders

When Sophie was in the hospital, her family had a constant need to keep up with medical information. Shelby says on one of her "Mom needs a break Target trips" she scrambled to gather what she needed.

Now she's putting those supplies together for others. One of the ways Shelby is making a difference is assembling and donating "Be Brave Binders" for parents facing what she went through. Her goal is to help people in medical chaos organize that one part of their lives. A Be Brave Binder consists of the following:

  • A 3-ring notebook
  • Page protectors for organizing business cards, a temperature conversion chart, brochures etc.
  • Tabs for financial aid paperwork, nutrition, rehab etc.
  • A hole punch, because most paperwork doesn't come with three holes
  • A blank monthly calendar with room to make notes on each day's treatment, progress and medication
  • A pencil pouch with pencils, pens, highlighters and post-it notes

Shelby's goal is to donate binders not just to the oncology floor but to cardiac care, cystic fibrosis and any other hospital areas where families find themselves overwhelmed with information during ongoing treatment.

Shelby's arms will never stop aching to hold her daughter. She quotes a counselor as saying, "Your child's death...when that happens the pretty polish gets taken off the world and you realize it's not that cool here. Even if she hadn't died, something like that completely changes you and you're never the same."

"The big takeaway is the world is so much bigger than your box. If you're able to impact others it's so important that you do. Sophie isn't here anymore. What was her fight worth if I don't make some good come of it?"

Follow Shelby's story and donate to build a Be Brave Binder on her Facebook page. You can also sign up to run with her team at the upcoming Gold Network of East Texas Gold Run on September 22.

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