Welcome to the "Starlight Family Stories", where you will find touching and memorable stories from Starlight children and families explaining how our programs and services have touched their lives.
Austin's Story
I am member of a rare and elite group I call "Club Med." It isn't the Club Med that takes you away to exotic vacation destinations. My Club Med instead is made up of families like mine whose lives have been changed forever by our children's life-threatening medical conditions. I did not choose to join Club Med --- we got an automatic membership on April 9, 2006 when my 9-year-old son Austin was diagnosed with leukemia.
Those of us who belong to Club Med go on the roller coaster ride-of-a-lifetime and are expected to handle all its unexpected loops, dips and turns and the mixture of extreme emotions that comes with them -- both happy and sad. Read more
Emily's Story
I like to think of myself as your average sixteen-year-old. I love to read, go shopping, go to the beach, watch House, dance and do yoga. I dream of going to college and becoming a pediatric nurse, so that I can give back the nurturing, care, and kindness that has gotten me through my whole life.
I was never a healthy child. When I was about two years old I was diagnosed with a kidney disorder known as Hypercalciuria, meaning that I get rid of too much calcium through my urine. This causes excruciating kidney stones and osteoporosis from the lack of calcium. It also causes an imbalance of electrolytes. I soon started to have involuntary movements and sounds which were eventually diagnosed as severe Tourette's Syndrome. Read more
Hannah's Story
In many ways, Hannah is your average fourteen year-old girl. However, Hannah's life has also been marked by profound challenges that few kids her age are forced to face. Several years ago, she began experiencing severe chronic migraines that kept her out of school for almost 2 years. Gradually, she began developing insomnia, then IBS, drops in blood pressure, sporadic episodes of hypothermia and intense itching. Her symptoms were such a mystery, that Hannah simply began referring to her condition as "Hannah Syndrome." Read more
We Brought Her in For a Tummy Ache...
At a recent Starlight Escapes event, 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 Child is Over the Moon After Meeting Astronauts
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. Starlight Escapes allow us time to get away from the hospital and the house to be with other families.
One recent Starlight Escapes 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.
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 Children's Foundation, which takes families away from the routine of medicine and doctors.
Through Starlight 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 Starlight Escapes 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.
A Scrapbook of Starlight Memories
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.
A Starlight Escapes 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 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 Starlight Escapes 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.
Starlight's Fun Center Was a Godsend
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!
In Their Words
Finding Friends 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 Starlight 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 Teenager
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 Ways To Help section to find out the many ways you can get involved -- from volunteering at a local Starlight Escapes to hosting a fundraising event for Starlight, there are countless ways you can make a difference.
