Welcome to the "families share" page, where you will find touching and memorable stories from Starlight children and families explaining how our programs and services have touched their lives.

If you would like to comment on any of the stories, or want more information on our programs and services, please send a note to: info@starlight.org. Have a story of your own to share? Click here to tell us about it.

We Brought Her in For a Tummy Ache...

At a recent Great Escape event in Orange County, California, we interviewed several families about their experiences with childhood illness. Watch the video below powered through our YouTube channel to hear what Rob and Mary had to share about what life has been like since their daughter Monica, now 13, was diagnosed and how Starlight has made a difference.

Starlight Children's Gallery

Children are always dreaming about what they want to be when they grow up. Starlight children are no different. Thankfully, recent advances in medical care mean that more and more of the seriously ill children Starlight serves will have the chance to celebrate a 25th birthday. As an organization that supports families from the time their children are diagnosed throughout their journey with illness, it brings tears to our eyes to see so many Starlight children who were once so very sick win their fight, grow into adulthood and make their dreams come true.

As we celebrate the 25th Anniversary of our organization, we asked Starlight children and their siblings to share with us their hopes for the future. The artwork that they created is now online at www.starlight.org/WhenIm25.  

One Starlight Family's Story

Since shortly after birth, our youngest son Alex was an unusually cranky baby, and nothing we did seemed to soothe him. My wife could never put him down, and he would only go to sleep if she rocked him. Then, when he was four months old, his head circumference began to grow much faster than the rest of his body and by nine months old it was off the charts. Amanda and I had raised four other children, and we knew that something wasn’t right. But no matter how hard we pushed, Alex’s pediatricians didn’t see any cause for alarm. They told us to “keep an eye on it” and didn’t run any diagnostic tests.

All of that changed one morning when Alex fell from the living room sofa onto the carpet, and lapsed into a deep coma. Paramedics rushed him to the hospital, and we all waited, terrified while doctors in the ER performed a variety of tests. After the longest, most excruciating hours of my life, they made their diagnosis: Alex had a congenital brain malformation called Dandy Walker Syndrome Variant.

Alex was in the hospital for two months, during which time he had multiple surgeries, treatments and therapies. When he woke up after his first surgery, it was as if he was a newborn all over again.

Amanda and I turned to our extended family and members of our church for help, especially when it came to making sure Todd, Ryan, Hunter and Jason were well cared for. As a parent, it’s heartbreaking to feel like you aren’t giving your kids as much attention and time with mom and dad as they need. And even worse when you see homework and grades start to suffer and behavioral issues develop. They missed us. It was a scary and uncertain time for everyone in our family.

One night while I relieved Amanda so she could have a break, I was walking the hospital corridors with Alex when I spotted a poster advertising an upcoming Starlight Great Escape. The idea of an all-inclusive event that would allow our entire family to have some fun together and distract us from Alex’s treatments sounded like a dream come true.

Once Alex’s health began to improve, we attended our first Great Escapes. Now we go whenever we can and all of our kids look forward to them. We’ve enjoyed many neat excursions -- Zoolights at the Phoenix Zoo, Monsters on Ice and the Circus just to name a few. They bring our family closer, simply by allowing us to set aside time to be together and forget, just for a little while, the treatments, therapies, surgeries, MRI’s, CT scans and worry associated with Alex’s illness. Without Starlight, there is no way we’d be able to afford or find the time to plan all of these wonderful family experiences... READ MORE

A Very Special Great Escape

Our family is so thankful for Starlight events! Because of my young son’s illness, we’ve had to endure many long hours at the hospital together, and it is hard to even want to go somewhere besides home. Great Escapes allow us time to get away from the hospital and the house to be with other families.

One recent Great Escape event had a space and astronaut theme, which was perfect for our little man. He loves rockets and to meet actual astronauts was an amazing experience for him! He was so excited that he even lugged along his own toy rocket to the event, which the astronauts graciously signed for him. I know that was a very special moment for him and now he keeps that beloved, signed rocket close to him at all times! It was a fantastic event and we are grateful for the opportunities Starlight provides, allowing us to be together as a family sharing fun and laughter.

A Circus Brings a Smile

We want to express to everyone at Starlight our tremendous gratitude for allowing our son to attend the circus last Thursday during a Great Escape event. It was extraordinary in so many ways. Our little boy does not get out very often from the hospital and he can be very shy, but it did not take him long to really get into the action and amazement in the center ring.

He was making animal sounds whenever the dogs or horses were out, and when he saw the elephants he would say with excitement, “Mommy, Dumbo!” We were pleasantly surprised at how well he handled the crowds and the music; this was the biggest event he has ever attended. The joy we experienced watching him is truly beyond words. This event was special to us in more ways that we could ever put into words.


 

An Escape from the Daily Struggles Cancer Brings

“My son has had health complications since the day he was born, and, one day when he was 6-years-old, I took him to the hospital because he seemed a little constipated. During the examination, a tumor the size of a volleyball was discovered right in the middle of his lung and the doctor couldn’t even find his heart because it was pushed under his arm by the giant tumor. We found out it was cancerous and the nurses gave me a list of nonprofit organizations that help people deal with cancer and illness. And that’s how we first learned about Starlight Starbright Children’s Foundation, which takes families away from the routine of medicine and doctors.

Through Great Escapes, we were able to forget about the daily struggles of a child with cancer: the constant fevers, the pain of treatment, and the isolation of being in a hospital. Now, when we know a Starlight event is coming, we start getting excited talking about where we are going and what we are going to do. And then after it’s over, we talk and talk about how much fun we had together. Once, we missed a Great Escape event because my son was in the hospital. A Starlight staff member didn’t want him to miss out and so personally delivered treats to him in the hospital -- brought the party to him! It meant so much to us and we are grateful for all the support Starlight has given us as a family."

Edna's Story

“My name is Edna and I am 11 years old. I have gone through two craniotomies to remove a malignant brain tumor and to insert a shunt. I endured 6 weeks of radiation to my brain and spinal cord, along with many blood transfusions, the insertion of a nasal-gastric feeding tube and nine bouts of chemotherapy. All of this was to help keep me alive and help me live longer. I lost all my hair, eyelashes, eyebrows and my weight dropped to 44 pounds. People would just stare at me.

Through my journey, I have met other children with my same condition who did not survive the treatments. I think and wonder why they didn’t make it and why I’m still here. Maybe I tried hard to be strong and live longer, because I didn’t want to see my mother cry. Everyday that I wake up, I am thankful for giving me a mother who sacrificed everything to stay by my side to make my life as normal as possible in the midst of my pain and agony. I am now disabled because of everything I have been through. I finished my chemotherapy in July 2006 and I am now suffering the side effects. I believe in miracles, because I have survived what others haven’t and feel that my story and my life is a miracle in itself, because I am still here.“ 

Browse a scrapbook Edna created about Starlight.

A Mother's Perspective About Her Son's Illness

When you ask most parents if it ever crossed their minds that one of their children might be diagnosed with a serious illness or have to undergo major surgery or, I am sure they will tell you ‘no.’

In my case, that’s all I’ve been able to think about since the day my son Alonso was born. My beautiful little boy had three major surgeries before his second birthday. After that, he seemed to be getting better, and slowly I let myself feel less afraid. But when he was 6 years old, the world came crashing down again as we rushed him to the hospital with stomach pains. Doctors knew immediately from the way my son was breathing that something was very wrong. The team of doctors who were called in discovered a tumor the size of a volleyball in the middle of Alonso’s chest. It was weighing on his lungs and pushing his heart so far out of place it was under his arm. When I heard the word “cancer,” the world stood still.

Immediately, we had to prepare for the scariest surgery ever. Our doctors were very honest with us -- they did not want to do the surgery. Before they took Alonso into the operating room, one doctor cried with us. Here I was with a doctor who does this type of surgery every day of his life, and he was crying. That’s when it really hit me -- this surgery was dangerous. We were terrified.

Starlight’s programs have made Alonso’s hospital stays bearable and have reminded my entire family that we are not alone in our struggle. Starlight makes it possible to leave the scary world of cancer behind, even if only for a little while, and allow us to laugh again and enjoy time together as a family.

I don’t know what we would have done without Starlight’s Great Escapes family activities. When Starlight invites us to an event, we get excited talking about it. And then after it’s over, we talk about how much fun we had. …and trust me, it’s a much needed break!

At the Great Escape Holiday Karaoke Party, Alonso did not feel well and didn’t want to eat or do anything at all. But when some of the kids and parents started singing and dancing, he leaned over and whispered in my ear that he wanted to sing. The Starlight volunteers put a big Mexican hat on his head and he sang Feliz Navidad and then did Ricky Martin’s Shake Your Bon-Bon as an encore. In no time, he was eating and dancing with the rest of the kids. We had so much fun!!!

Most of the time in the hospital, Alonso doesn’t feel very well, and just wants to lie in bed and sleep. But he loves to play video games. Starlight’s Fun Center mobile entertainment unit with its Nintendo gaming system and DVD player can roll right up to his bedside. But I like to put it in the playroom and make him get up. The chance to play on the Fun Center gets him out of bed and moving which keeps his energy level high. He will play for hours and think he has only been playing for five minutes! The Fun Centers make the time fly by at the hospital and keep his mind off of his sickness.

When a parent first learns of a child’s illness, the family feels like life will never be normal again. And that’s true. Eventually, cancer, chemo, fevers, hospitals and medicines are what’s normal. It’s an emotional roller coaster.

As a mother, I am grateful to Starlight for helping not only Alonso, but my entire family too as we struggle through this ordeal. I hope that Starlight is always there to shine a light into families’ worlds just as they have brightened ours, a little each day.

Bringing a Family Together Through Great Escapes

What a difference Starlight has made in my family’s life! I have three children and when my youngest got diagnosed with a rare form of cancer, it took the life out of all of us and turned everything upside down. We had to get used to living out of hospitals – sitting long hours in the hospital’s family area, waiting by my daughter’s bed and anxiously watching her go through treatments. With Starlight’s Great Escapes, my children were able to meet others going through the same thing to realize they are not so different after all. The volunteers at Great Escapes are wonderful! With their smiles and caring attention, we felt normal again for a day.

I never thought I could experience such kindness from people who don’t know me – they laughed with us and looked us in the eye and offered us hugs. Thank you for giving us an afternoon out of the hospital and making us feel like a family again. We are stronger than ever now.

A Great Escape Princess Event Leaves Four Girls Smiling

We have four children with life threatening congenital heart defects and, because of this, our lives have consisted of numerous surgeries and lengthy hospital stays. Not only is it hard on the sick children, but also on the siblings who often have to give up playing with friends to wait in the hospital for one of their sisters. With Starlight’s Great Escapes, we’ve come together again as a family and enjoy spending time together away from the hospital, escaping our daily worries and fears. Recently, my girls had such a wonderful time at the Great Escape Princess event! Each girl just blossomed that night as they were pampered like princesses. They talked about it for weeks and insisted on hanging a picture of them all dressed up together in our living room! It is so comforting to see their huge smiles and we will always cherish that memory. We can not say enough about how much Starlight means to us. It has given our family hope. Thank you from the bottom of our hearts.

A Mother's Perspective

Up until a few years ago, my family was just like any other family in your neighborhood. My husband and I were both busy working professionals, and our children were happy and healthy. My son Michael was an 8-year-old little boy who loved to ride his bike, play video games, and clown around with his older sisters Kathleen and Cynthia. Then one day, our whole world was turned upside down. Michael burst into my bedroom at 5 a.m., crying, clutching his chest in pain and barely able to breathe. He was running a very high fever and was in such serious distress that we rushed him to the hospital. From that morning on life changed forever.

After many tests, x-rays, CT scans, and a biopsy, Michael was diagnosed with a very rare, but deadly, form of bone cancer. The doctors found a massive tumor that was growing out of his rib, pushing against his lung and liver and causing my little boy all that pain. I felt as if I was going to die. As a health professional, I knew immediately what Michael’s prognosis was, and I knew that it wasn’t good. Emotionally I was a wreck. Our life became a whirlwind of doctors, hospital rooms and medical treatments. Michael had surgery to remove three of his ribs and part of his lung. He endured ten months of grueling chemo – every six weeks for three to six days at a time. Nausea, fatigue, infections, pain, transfusions, and isolation were a regular part of his world. At night, my mind would fill with unanswered questions. While searching the Web for any bit of information that might help, I found Starlight’s Coping with Chemo and devoured every bit of information about the disease and its treatment... READ MORE

-Judith Wong
Starlight Mother

How Starlight's Fun Center Helped Jason

Recently, our nine-year-old son Jason was checked into the Critical Care Unit. Always a very active child, we didn't know what had suddenly made our little football star feel listless and just not himself. Doctors diagnosed him with diabetes and immediately began treatment to stabilize his condition. After three tense days, Jason started to perk up. That's when the nurses rolled in a Starlight Fun Center. The Fun Center was a godsend for Jason. At first he could only watch his favorite movies because he couldn't use his arms. But then he progressed to using the game controls and played hours and hours of Mario Superstar Baseball. Although still weak, Jason had a big smile on his face for the remainder of his stay. 

By the end of the week, Jason was back to his venturesome self. Thank you for all the joy you bring to young patients like our son!

How One Starlight Child Gives Back to Other Sick Kids

One very special Starlight child, Michael Jackson, 16, suffering from cerebral palsy, has helped other seriously ill children who are struggling with the pain, fear and isolation of a prolonged illness. His many efforts to give thanks to Starlight's programs and show his support to the Starlight family include creating a special donation page to help raise funds for other sick children. Visit his very own web page at www.starlight.org/friends/michael and help us help Michael make a difference.  

Hi my name is Michael Jackson and I have cerebral palsy, which means I spend a lot of time seeing doctors in the hospital.  In fact, I've had nearly 50 surgeries!  I can walk a little with a walker but mainly get around in my wheelchair.  I receive physical, speech and occupational therapy two times every week. I was first introduced to Starlight when I was in the hospital and it had computers which connected kids from hundreds of hospitals through a network called Starbright World.  We would chat as we waited for surgeries or treatments. It was a great distraction! I forgot to worry because I was making new friends.  When I knew I was heading back to the hospital, the fact that I could get back on Starbright World made it a little easier.

It is very cool that Starbright World is now online because I can log on from the hospital and from home! It's really nice to talk everyday with my Starbright World friends from all over the world.   Even if we don't have the same illnesses, we all understand what it's like to be sick. I can just be myself with them!  We chat, post pictures and write blogs. 

Being able to connect with friends who can relate really helps... READ MORE


-Michael Jackson
Starlight Child

In Their Words

Finding Connection Through Starbright World: Being a teenager in high school is never easy, but just think… if you had an illness it is even more challenging. As a high school senior living with muscular dystrophy, it is almost impossible. One thing that helps me is an online social network for seriously ill teens called Starbright World. I log on everyday to talk to my friends from all over the world. We all have different conditions, but everyone understands what it's like to be sick and they don't make me feel bad for my illness. Starbright World connects you to people who really care about you.

-Starlight Teenager



Ending the Isolation of An Illness: I call Starlight my special place, because, through Starlight's programs and special events, I can meet other children who, just like me, suffer from a serious illness. At Great Escapes, I've made many new friends with kids who know what it is like to be painfully sick and we have a chance to talk openly and not feel judged - they like me for who I am. Starlight is so special to me because they have shown me that I am not alone.

-Starlight Child


Spending Family Time Together: Starlight's programs have been the most wonderful thing for my family because we were able to spend quality time together -- just like we once did before my daughter's illness. You brought back a normal time to my family; after we have been through so much it is hard to remember what normal once was.  We have been able to spend time together as a family and we feel so supported.  I personally thank you from the bottom of my heart for the experiences that you bring!

-Starlight parent

Much Needed Distraction: I was introduced to Starlight when, a few years back, I was admitted to the hospital nine times. During these long hospital stays, I used Starbright World on a daily basis, and it was through this program that I was able to talk to other kids to help make my visits more pleasurable. I took place in a live chat with kids across the country and participated in an essay contest about the NBA, in which I took second place! Starlight Starbright helped me to cope with my illness, and I want to thank you for providing programs that allow more and more kids to have hospital stays that are less stressful.

-Starlight Child

Learn more about becoming a part of the Starlight extended family to make a difference in the lives of seriously ill children and their families. Visit our how to help section to find out the many ways you can get involved -- from volunteering at a local Great Escape to hosting a fundraising event for Starlight, there are countless ways you can make a difference.

To make a donation today, visit www.starlight.org/donate.