Starlight Families Share

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.

Malikia's Story

Malikia was a preemie when she was born. She cried all of the time, but the doctors repeatedly told me I just had a collicky baby on my hands.
 
News of her illness came to us when she was four months old.
 
As I was breast feeding her one day, Malikia bursted out with a horrible scream. It was a scream I had never heard before, a scream I certainly had never heard coming from any of my other three daughters.
 
That same day, I took Malikia to Minneapolis Children's Hospital. The emergency room doctor looked into her eyes and told me, “I believe your daughter has a rare bone disorder.” She was diagnosed with Osteogenesis Imperfecta, a condition that causes extremely fragile bones. We were sent to Gillette Children’s Specialty Healthcare in St. Paul, MN. X-rays showed that Malikia had multiple fractures that were at different stages of healing. The scream she had let out days before while I was breastfeeding her was because of a spiral fracture she received to her main leg bone. READ MORE 

Lauren's Story

Every day, I give special thanks for the life I almost didn’t have.  And, I give thanks to Starlight for helping me find my way out of the darkness into the light.

I can’t tell you how wonderful it is to be writing this, to be able to tell you my story from the other side after coming through it all.

Six years ago I wasn’t sure I’d ever get out of my bed.

When I was 13 years old I got very sick with a rare disease that affected my nervous system. It took many painstaking months before the doctors were able to diagnose me, and even then, no one could give me a prognosis or predict if I would live much longer.  During that year, most of which I spent in the hospital, I slowly became paralyzed until I was able to move only my right hand. Severely allergic to light, I spent the next several years in darkness.  READ MORE 

Monica's Story

When my daughter Monica was 12, I took her to the doctor for a tummy ache. I was absolutely stunned when doctors told me that she had leukemia. It’s beyond anything that a parent can imagine — to learn that your child has a life-threatening illness. I remember thinking, “this doesn’t happen to us, it happens to other people.” But as hard as it was to believe, the diagnosis was accurate, and we began fighting that terrible disease from that day forward. 

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 what life has been like since Monica, now 13, was diagnosed and how Starlight has made a difference.

Briana's Story

My namis is Jeanette, and my 13-year old daughter Briana is battling Rhabdomyosarcoma, a rare type of cancer that has caused a tumor in her chest.

Since her diagnosis, she's spent more than six months in the hospital undergoing chemotherapy and other treatments, and there are more long weeks and months ahead. I spend days and nights in the hospital and my husband Jeff and Briana's 8-year-old sister Morgan come after school and on weekends.

It often feels as if the hospital is our first home and our house is our second home. READ MORE

Leia's Story

My 11-year-old daughter Leia suffers from severe asthma. I have lived with asthma all my life too, and never once thought of it as a condition that could kill you. But when she was just 6-years-old, Leia suffered an asthma attack that was so severe, her lung collapsed. As if trapped in a nightmare, my wife Laura and I found ourselves sitting by our little girl’s bedside in the ICU while she struggled for her life. I will never forget the day her doctor came to us with tears in his eyes, confessing that for a few days, he had feared Leia wasn’t going to pull through. Thankfully, her condition improved.

Being moved out of ICU was only the first step in a long and frightening journey. READ MORE

Hannah's Story

I was always a healthy child; I never complained of anything and was rarely sick. I never wanted to miss school even if I had a cold. But, that all changed on April 13, 2006 when I was fifteen and a freshman in high school.

I decided to stay home that day because I threw up the night before and I certainly did not want to throw up in school. After my mom left for work and my younger brother was at school I woke up because I was feeling extremely nauseous. I tried to eat a little breakfast, but that didn’t settle my stomach. I immediately ran to the restroom and threw it right back up. Over the course of the day I got progressively worse. By the time my mom got home that afternoon, she took one look at me and knew that something was wrong. READ MORE

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

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 Escape. 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

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 the scrapbook Edna created about Starlight.

Starlight Made Sure We Weren't Alone in our Struggle

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.

When Our World Was Turned Upside Down, Starlight Was There

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 

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!

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 through Starlight's online social network called Starbright World.  Kids like me around the country 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 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

Help us brighten their lives a little each day. 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.