Starlight Stories

Vicky's Story

During her childhood and teenage years, UCLA Medical Center was Vicky’s home away from home.

Vicky was diagnosed with Biliary Atresia when she was two months old and received two liver transplants, the first at just two years old and the second when she was sixteen. Vicky spent time in the hospital during her transplants and would also be hospitalized weeks at a time from common childhood illnesses because her immune system was suppressed due to the transplant.

“I spent endless days, weeks and even months in a hospital room, going through painful procedures, feeling sick, being alone and waiting to get well,” said Vicky. “It really impacted my childhood. Thankfully Starlight Children’s Foundation was there to help make UCLA Medical Center my home away from home.”

Vicky would take a break from her hospital room and visit the Starlight Site, a beautifully designed playroom that served as an escape from the isolation of a hospital room, to enjoy doing “fun kid’s things.” She would borrow Monopoly to play for hours at a time with her sister when she visited. Vicky also benefited from one of the first Fun Center units with an extensive video collection that nurses would roll right up to her bedside.

“I can truly say that Starlight Children’s Foundation has made a direct difference for the good in my life,” said Vicky. “Without them, I would have had a hard time overcoming my medical challenges, and overcoming those challenges has shaped me into the person I am today.”

Today, Vicky has a career where she gets to make a direct difference in people’s lives just like Starlight did for her. As the Multicultural Community Development Coordinator for OneLegacy, she reaches out to communities to raise awareness for people to become registered organ and tissue donors.

“I want to thank Starlight Children’s Foundation for its dedication to children who are sick in hospitals,” said Vicky. “Your mission will live through the children you have impacted, like me.”

Shaylee's Story

Shaylee was born healthy, happy and an absolute gift to her parents. Then one day when she was just a toddler, Shaylee suffered a seizure. Her parents rushed her to the hospital where they learned she had a rare condition called Intractable Epilepsy.

Shaylee underwent major brain surgery and most of her right occipital lobe was removed. The surgery left her with partial vision loss, developmental delays and changes to her personality. So much of her brain was removed that her parents had no idea who she would be when she woke up.

Despite the surgery, seven-year-old Shaylee still suffers from seizures every day and probably will for the rest of her life.

The severity of Shaylee’s condition has required her to go through countless procedures, ongoing therapies and endless medical appointments. It has required her parents to contend with ever-mounting medical bills, exhaustion and sometimes complete isolation. 

“Starlight Children’s Foundation serves families like ours, and kids like Shaylee—children who have severe, chronic illnesses,” says Shaylee’s mom Erika. “When trapped in the confines of childhood illness, it is all too easy to get caught up in the constant doctor’s appointments, procedures and medical bills that fill our lives. Starlight has been there for us throughout Shaylee’s journey.”

Astra's Story

Astra loves to dance. It’s her favorite thing to do but she has missed classes, rehearsals, shows and competitions because of her illness. Spending long periods of time in the hospital for issues related to her Crohn's disease, gastroparesis, interstitial cystitis and permanent feeding tube, she often felt very alone.

“I never knew anyone my age who was sick or had to spend so much time in the hospital like I did,” said Astra. “I felt very isolated and no one I knew could really understand what I was going through or how hard it was to be so sick all the time.”

After becoming a member of the Starbright World® online community (SBW), she began making friends with teens all over the world who understood what it was like to be chronically ill.

“Starbright World instantly felt like home,” said Astra. “For the first time I had other people my age who I could talk to and bond with over our shared experiences, stories of medications, painful procedures and the long hospitalizations we'd all had to endure.”

SBW helped Astra by surrounding her with an amazing community of other young people who, like her, are determined not to let their illnesses stop them from accomplishing all of their goals in life and following their dreams.

After graduating from the SBW community, Astra was such a fantastic mentor to the younger kids that Starlight asked her to stay on and be an adult volunteer. She is also a Huffington Post blogger for Starlight, and you can read Astra’s most recent post “Dancing through Illness.” 

“I hope sharing my story inspires other teens who are on their own medical journey to connect with others.”

Amy's Story

Amy is a 17-year-old Starbright World® (SBW) online social network member from Australia who lives in Indonesia. She has spastic diplegia cerebral palsy, hip dysplasia and juvenile arthritis. Amy walks using forearm crutches, has issues with her hands and is sore much of the time. She’s unable to participate in sports activities or even go to a restaurant because it’s nearly impossible for her to climb stairs.

After more than 10 orthopedic surgeries, several months of hospital stays and countless hours of outpatient therapy, Amy has spent a lot of time away from school and people her age. Growing up in a small town, Amy didn’t know anyone else with a physical disability – which left her feeling isolated and alone.

“Luckily, I found Starbright World at age 15,” says Amy. “My whole life has changed since.”

Through SBW Amy met someone in the United States who underwent the same medical procedure she did, when only 20 people had received it in Australia at the time. If she was unable to sleep at night in the hospital or just in pain at home, SBW was there.

In 2011, Amy spent the entire summer holiday – which is 8 weeks in Australia and includes Christmas Day – in the hospital.

“I was still able to have one of the best Christmases ever with all my best friends from my Starbright World family,” Amy remembers. “We had a virtual Christmas turkey and presents, and it was literally so fun it took my mind off the fact that I had about 10 tubes stuck in me.”

Recently, Amy was voted to become a Starbright World Community Leader and she is proud to be able to give back to a community that has helped her so much.

Hannah's Story

Twelve-year-old Hannah has always loved dance, but she is prone to concussions and skull fractures when she is physically active.

Her physical limitations couldn’t stop her from meeting one of her favorite television stars, Maddie Ziegler from the Lifetime show “Dance Moms,” and sharing her personal experience with a chronic illness.

Hannah stopped breathing when she was five days old. She suffered from frequent apnea, asthma, headaches, and acid reflux. She lived her life in and out of the hospital, undergoing countless tests . For the first two and a half years of Hannah’s life, her mom, Lori, was overwhelmed with fear for Hannah’s life. When all hope for an answer seemed lost, Hannah’s gestural doctor at Children’s Hospital of Pittsburgh suggested she have an MRI of her brain. This led to a Chiari malformation diagnosis. Hannah’s brain tissue was protruding into the spinal canal which required the life-saving surgery to remove a piece of her skull and part of her top vertebrae to relieve pressure on her brain. Hannah continues to visit Children’s Hospital of Pittsburgh once a year for an MRI.

“Starlight has been really helpful to my family,” says Lori, who has watched Hannah relax with a Starlight Fun Center and in a Starlight Site at Children’s Hospital of Pittsburgh. She and her family have also enjoyed several Starlight-sponsored outings with Hannah and her siblings. “When your child is sick, it is nice to know that people have donated money and items for your child to feel safe, secure, and that someone out there cares.”

Hannah credits her neurosurgeon, Dr. Ian Pollack, at Children’s Hospital Pittsburgh with saving her life. This year, she was deemed strong enough to enroll in her very first dance class and perform in the end-of-year recital, proving that her dance dreams can come true.

Michael's Story

Michael Jackson leads by example and shows the world that nothing should get in the way of happiness.

Born at 32 weeks gestation with spastic quadriplegic cerebral palsy, Michael’s physical disability, was caused by a bleed in the brain affecting all four limbs in addition to speech and breathing issues.

But with a modified van, a power wheelchair, and a can-do attitude, Michael’s diagnosis does not define him! At 18, he is a college student, majoring in psychology. He enjoys kayaking, downhill skiing, archery, wheelchair soccer, hanging out with friends, and has a passion for water skiing.

In 2007 (at age 12), Michael was invited to speak at annual Starlight Children’s Foundation event. Since then, Michael has served as an unofficial “Ambassador of Laughter” with Starlight and is actively involved with Starbright World®, Starlight’s first-ever online social network for teens with chronic and life-threatening medical conditions, and their siblings.

While undergoing treatment at the Polinsky Rehabilitation Center in Duluth, Minnesota, USA, Michael felt that other children would enjoy the Starlight Fun Center® as much as he did - so he took action. In recognition of his community service, he became a NASCAR Foundation Betty Jane France Humanitarian Award finalist. His designated charity was Starlight and the money received in Michael’s honor was used to place five additional Fun Centers.

If you meet Michael, he invites you to: “Come say hi--get to know me--just like you would any other new friend. It shows you care and makes you a more understanding, open, and educated person. Not everyone lives the same life you do, so come learn about mine. I won’t even run over your feet with my power chair.”

Adam's Story

Adam is a Special Olympian, an advocate for people with disabilities and an alumnus of the Starbright World online community. He was born with Hydrocephalus (Water on the Brain) and has endured more than 50 operations to replace his shunts throughout the almost 30 years of his life.

Adam was introduced to Starbright World when he was 18 years old after being admitted to the hospital with an infection in one of my shunt lines, following his high school graduation. Spending time in and out of the hospital that summer in 2002, he felt depressed. But thanks to his Child Life Specialist he was encountered to Starbright World. He made many friends with all types of illnesses I made from all around the country (and now world!) who gave him a whole new world of memories he will never forget.

Adam is now part of the Starbright World community working as a Volunteer Chat Host. He is sharing his experiences of hospital life and making new friends smile as he helps moderate the chat rooms.

Although he has a serious illness, Adam is achieving goals and experiencing dreams he could never have thought possible a decade ago. In fact, Adam is currently competing as an Olympian in the Cycling events at the 2014 Special Olympics USA Games, June 11 – 21, in New Jersey.

He says, “I am thankful to Starbright World for giving me support over the virtual world and hope to bring back the Gold to share with them!”

Tell someone you know today about Starbright World.

More Starlight Stories

Tell Us Your Story

We want to hear your Starlight Stories - click here to share your story with us.