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. If you are a Starlight family who would like to share your story, please click here.
Seven-year-old Kylee is one of those children you'd call a spitfire - that is, until her youthful energy suddenly sputters out.
It's then that her pink "Hello Kitty" backpack comes to the rescue.
A permanent fixture on her shoulders, in place of the usual hair bands, glittery notebooks, colorful pencils or any of the other things you might find in most little girlsâ€™ backpacks it carries a packet of nutrient rich milk and high-protein formula that feeds Kylee through a tube inserted directly into her small intestine.
From the moment she was born, Kylee has had severe health problems, including digestive issues, seizures, developmental delays, a lazy eyelid covering half her pupil and an inability to sweat or regulate her body temperature in extreme heat or cold. Doctors inserted her first feeding tube at 23 months, and she has since had 5 major surgeries, 7 minor surgeries and countless painful and invasive diagnostic tests. READ MORE
Nikki and Spencer: Life After "I Do"
When I was a little girl growing up in Bird City, Kansas, I was always mesmerized by the large, stained glass windows of my church. I wanted these same windows surrounding me when I married Spencer on June 3, 2011.
A week before the wedding, Spencer and I arrived in town to assist my mom with some last minute preparations. She was already so stressed! Of course, I had some pre-wedding jitters myself. Two days before the big day,I tried on my dress only to find out it was too large! Again and again, it was mom to the rescue.
However, my actual wedding day proved to be absolutely GREAT.
I had my sister as my maid of honor and two bridesmaids - a best friend from high school and my other best friend, Emily, from Starbright World. Spencer had his brother as a groomsman and his best friend Kristin (yup, a girl!) as he best "wo"man.
As I walked down the aisleandsaw Spencer for the first time, all I thought about was how handsome he looked in his tuxedo.
When he saw me, his eyes just lit up. You could read it all over his face - he was so happy.
It was such a perfect moment. READ MORE
Jana 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 her 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." READ MORE
When I was about nine or 10 years old, I started to get really tired and began to gain weight. After a few months, my mom and I flew out to Chicago to meet with doctors (we had been living in Mexicao at the time) and I was diagnosed with my first illness, Hashimoto's thyroiditis, an autoimmune disease that was causing my cells to attack my body.
Again, I was only 9 or 10 at the time, so the news didn’t strike me as being too big of a deal. My mom and I terribly missed my two brothers and dad – “the boys” - back in Mexico, but other than that, I was fine with having to take one pill every day for the rest of my life.
Then, in 2007, our whole lives changed completely.
My immune system began attacking my gallbladder, so on my 14th birthday I had it removed. During my surgery, doctors performed a biopsy of my liver and it landed me a second diagnosis - Autoimmune Hepatitis, and at stage 2 failure (there are four stages altogether). READ MORE
When Quinn was about 10 days old, I noticed he was vomiting significantly more than what could be considered normal. At first, the doctor discounted it as "spitting up." Then he thought Quinn had acid reflux. Yet, as Quinn struggled with every ounce of food, it quickly became apparent that something else was wrong.
He was diagnosed with failure to thrive and later with eczema and asthma. We began making weekly visits to the doctor and trips to see specialists all over Washington.
At seven months, Quinn received another diagnosis — Eosinophilic Esophagitis, a serious allergic inflammatory condition affecting approximately one in 2,000 children. Eosinophils are a type of white blood cell that in a healthy immune system protect our bodies from infection. Quinn's Eosinophils mis-identify food as a parasitic infection and cause him to have pain, inflammation, nausea, vomiting, dysphasia and other serious complications.READ MORE
The story of Lizeth’s illness begins when she was just 18 months old. She was a very playful and loveable baby, however, one week she developed a fever that just rose and fell and made her pale and anxious.
At first, I thought it was a cold, but took Lizeth to the doctor to be safe. After running a few tests, the pediatrician concluded that Lizeth had anemia and prescribed iron pills. The next day, I still felt uneasy, and took Lizeth back to the doctor for more tests. An ultrasound was READ MORE
of Lizeth’s stomach and before I knew it, the doctor had me on the phone urging me to take Lizeth to the emergency at once.
When Catriona was born, she was very thin at just five pounds and her skin was yellow. I knew something was not right.
After several weeks of testing, we discovered Catriona had a genetic disease called Alpha 1 Antitrypsin Deficiency that affects the liver and lungs. Catriona had cirrhosis of the liver — as a newborn!
My daughter’s diagnosis completely turned our lives upside-down. My husband and I had always planned on returning to Ireland, our home country, with our family. However, Catriona's medical care became our first priority, and we knew it was in our best interest to stay in Boston and treat the disease. READ MORE
When I was pregnant with Crysta, I had my first ultrasound at 18 weeks.
The doctor quickly suspected that something was wrong.
The next day, a second ultrasound confirmed the worst -– my baby had spina bifida with hydracephalus and paralyzed legs. The diagnosis was a reality call.
My family has been down a hard road, but I refuse to let Crysta’s diagnosis define her. She is a gift from God and perfectly made, and because of this I am blessed beyond words. READ MORE
When he was just 3 months old, Nidal suffered third degree burns on his face and left hand when he was badly burned in a fire. The burn on Nidal's hand was so severe, it resulted in the loss of his fingers.
Nidal never had access to good medical care. Recently, however, he was given the chance of a lifetime.
Thanks to the Palestine Relief Fund, Nidal, now 10 years old, left his small village in Palestine and arrived at Scottsdale Healthcare Shea in Arizona to have his face, smile and hand reconstructed by doctors. He was very excited!
During his stay, the Phoenix community opened its heart to Nidal. Here, Nidal’s caretaker (and friend) Lena shares more about the young boy’s life-changing surgery and the Starlight Fun Center that brought him relief and smiles during his painful recovery. READ MORE
My son and I are so appreciative of the Starlight Fun Center at the pediatric ward of Winchester Hospital.
At the end of June, my son Oren woke up with a rash that was terribly itchy and warm and covered most of his torso. Throughout the day, the rash would disappear and later reappear in different areas of his body. The character of the rash was odd and never exactly the same, but consistently more intense and extensive whenever it reappeared.
When the rash managed to cover Oren’s face, he was taken to the emergency. READ MORE
When Shelby was just 10 days old — still too young to come home from the hospital — doctors discovered a small hole in the upper chambers of her heart and diagnosed her with congenital heart disease.
Within a year, she underwent an ASD/Partial VSD repair to correct the problem. Little did we know at the time that it was only the first of many health challenges that Shelby and our family would face. I had always thought, “this could never happen to us,” but since that time, our lives have changed completely. READ MORE
Because Tyler was our first child, we didn’t exactly know what was normal and abnormal. At 6 months old, he kept having repeated head, arm and body spasms. When these spasms started to increase daily, we began taking him to different doctors until we finally found one that was familiar with what he called “infantile spasms”— and Tyler was diagnosed with Tuberous Sclerosis Complex (TSC).
We were devastated. READ MORE
One August morning in 1992, I noticed Brittni did not want to stand or hold her bottle. I’d put the bottle in her right hand and she’d transfer it to her left.
Some time later, I noticed that when she’d lean against the bed, she’d tap her toes, as though she didn’t want to put any weight on her right foot.
It was when I noticed that Brittni’s right leg would stick straight out when I took her for rides in her stroller, that I finally pointed my observations out to my mom who said to go right over to the hospital and have Brittni checked out.
That same night, after hours upon hours of tests, the ER doctor told me Brittni had suffered hemiparesis. She had had a stroke. READ MORE
Little Joe's Story
I was deployed to Iraq when my wife was 6 months pregnant with our first child. When “Little Joe” was born on July 7, 2003, I wasn’t able to come home but that didn’t stop us from celebrating his birth together by phone and through the Internet.
Our joy quickly turned to concern over the next few weeks when Little Joe became very sick. Liz kept taking him to the doctor, but each time they assured her that he was fine, saying that her “new mom stress” and my deployment were causing her undue anxiety. But weeks passed, and Joe began to lose a lot of weight. At 6 weeks old he had dropped from 11 pounds to only 8 pounds. It was clear something was very wrong and so our tiny baby was admitted to the hospital. READ MORE
Spencer and Nikki's Story
My name is Nikki and I’ve been a member of Starbright World since 2006. And I’m Spencer, and I joined Starbright World in 2003.
"When I was 13, I was diagnosed with a terminal disease called Cystic Fibrosis,” explains Spencer. “Normally, CF is diagnosed in infants and toddlers, but when I was younger, we always made excuses for my symptoms. Like the fact that I always had a terrible cough must have been because of the sinus problems that run in my family.”
“Just like Spencer, back when I was 11 and first got sick, my family didn’t imagine something was really wrong,” recalls Nikki. “ We thought I kept getting the flu. But I got worse and worse, and finally couldn’t eat at all and was in constant severe pain, so we went to the doctor. A blood test showed that my system was severely messed up, so my family doctor referred me to a specialist in Denver who diagnosed me with Crohn’s Disease." READ MORE
When Josh was first born, his heart stopped, and he was sent to the hospital’s upper nursery. A day passed, bringing no improvement in his breathing.
We were transferred to Children’s Minnesota, arriving at 10:30 pm and learning at 3 a.m. the following morning that Josh had single atrium, single ventricle Total Anomalous Pulmonary Venous Connection (TAPVC), a rare congenital heart defect. Josh was also diagnosed with D-Transposition (his heart’s aorta and vena cava were switched from their normal positions) and Dextrocardia (which means his heart was situated on the right side of his body instead of his left). READ MORE
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
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
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.
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
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
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
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
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
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...READ MORE
Edna's 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.
Browse the scrapbook Edna created about Starlight.
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. READ MORE
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... 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 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