In Their Own Words

Jeffrey's Story

Starlight mom Sandy shared her family’s story with guests at the December Holiday Tea in Dallas:

“When we are out, people often stare at Jeffery or ask about his suction machine. He just waves. Or says that people must stare because he is so cute.

But at Starlight Great Escape family events, no one stares. It is very special to be with families just like mine who understand what it’s like to have a seriously ill child and who understand that a child is not defined by his or her disability. The staff at Starlight understands that, too. Starlight and its programs like Great Escapes make sure that we never feel alone. They distract us from what we deal with day-to-day and most importantly, they help us gear up to face the next challenge.

We have made so many special family memories with Starlight! Great Escapes bring so much joy to both Jeffery AND his older brother Tommy. Jeffery is always made to feel both incredibly special and completely normal at the same time and Tommy has a chance to relax and have fun too.”

Jana's StoryJana loves all things girlie. She has a serious Barbie doll collection, a penchant for fashion and changes clothes depending on her mood. She believes a well-placed Cinderella decal can enhance just about anything, and is quick to offer to bake cookies. When you meet her, her femininity and generosity shine through. 

Then, when you hear her story, you realize that this young woman is also as tough and resilient as they come. Five years ago, at age 6, Jana went from being a healthy child to almost dying from what doctors later diagnosed as severe aplastic anemia.

“It was Halloween,” recalls mother Emma. “We took her to the hospital because she had a fever and was developing strange bruises. She was rushed to the ER, and doctors discovered that her bone marrow was hollow and that she had no platelets or hemoglobin. They started to call her the ‘walking dead girl’ and had no idea of what was wrong with her.”

Emma and her husband Angel literally lived in the hospital with Jana for three years. During that time, the doctors finally attached a
diagnosis of severe aplastic anemia, but remained uncertain as to what was causing Jana’s condition. Her immune system became
entirely compromised and doctors fought to keep her from “bleeding out.”

In April of 2007, Jana, with the use of heavy steroids, finally had a successful bone marrow transplant. Still, her health continued to
deteriorate.

“My daughter has died five times,” Emma shares. “Last year, they told us again that she wasn’t going to live, and were preparing to give her opium to ease her final days. And then, suddenly, she began to get better. Doctors couldn’t figure it out. I give thanks every day that she is still with us.”

“Throughout our ordeal, Starlight has meant so much to us. Jana is uncomfortable around most people, but not other Starlight families. Starlight families didn’t stare when she lost all of her hair, or had a line in for feeding or had to take a lot of medications — everyone is in the same boat. The way the Starlight kids talk with one another makes you realize they are in their own little world. They talk about what medications they are taking or what procedures they have to have. During a time when everybody feels alone, Starlight provides us with a support group. Starlight is like glue, holding us all together.”

Jana is now home schooled and no longer taking medication — only vitamins. At a recent doctor’s visit, she learned that she had grown quite a bit in the last six months and that her vital signs were normal.

“My daughter never complains about pain and believes that she is here for a reason. Our family has seen that there can be a light after illness — we have survived.”

     - Starlight Mom Emma

Learn more about Jana and two other Starlight children — Marcelo and Kylee — in Starlight's 2010 annual report entitled Life As They Know It.

In partnership with photojournalist Marissa Roth, Starlight has captured a powerful group of photo essays that illustrate the journey of hope and pain that families experience when the crisis of childhood illness strikes. We are proud to unveil the first three of these emotionally charged essays as part of this annual report, as well as to recognize the many generous individuals and organizations whose gifts of time, goods, services and financial resources have helped families like these find renewed strength, optimism and resilience.

Check out Life As They Know It to better understand what life is like for Starlight families, see how Starlight is making a difference, and appreciate more than ever how organizations and individuals like you are helping us brighten their lives, a little each day. 

To help Starlight reach out to more families like Emma's, please make a gift today.