Starlight Families Share
Our daily struggle with childhood disease began when our Isabelle – “Izzy” - was born. Izzy would inexplicably have severe reactions to things ranging from environmental elements all the way to foods. Her reactions included rashes so severe that her skin would break down and bleed. She would vomit with such force that it would exhuast her.
We were convinced that Izzy was reacting terribly somehow, in some way, to food. Two brain MRIs, two stomach MRIs, many ultrasounds, three gastric emptying studies, a half dozen surgical scoping procedures and a couple of probing studies later, we got the answer.
Now three years old, our Izzy battles a nefarious and unpredictable auto-immune disease called Eosinophilic (eee-oh-sin-oh-fill-lick) Esophagitis (EoE) that makes many food and environmental proteins the enemy.
It’s incredibly ironic that the one thing that is supposed to sustain us can actually be the one thing that hurts our daughter. READ MORE
When our son Drew was one year old, we noticed he didn’t behave like other children his age.
Drew would never leave my side to play. He would refuse to step onto curbs or any other type of step. Even with the slightest touch, he would cry in pain. He would only move from his bed to the couch and back again.
These symptoms, along with ear aches, infections and colds that never seemed to go away, were just the start of the discovery of our son’s condition. One Saturday, when Drew was about two and a half, he came to me with a rash on both of his legs; the following Monday, he came to me with a bloody nose—the rash had spread from his legs to other parts on his body, and he was bleeding in other places as well.
Our doctor immediately sent us to the emergency room, where after 16 hours of waiting, we were finally referred to Children’s Hospital in Orange County. Drew spent the next week in the hospital’s controlled Cancer Unit. After every test one can imagine, Drew was diagnosed with X-linked Agammaglobulinemia, which is an immune deficiency disease that causes the body to be unable to produce anti-bodies to fight off infections. READ MORE
Sophia and Seth's Story
One October day, my family was on its way to San Diego for a vacation. Our plan was to stop at Legoland and Sea World so our kids could go trick-or-treating and then continue our way into San Diego. But just as we crossed into Santa Ana on the I-5 freeway, the rear driver’s side tire blew knocking out the fuel pipeline, and that's when our nightmare began. The car caught on fire before we could even pull over to the shoulder of the road.
Our two children, Sophia and Seth, suffered from second and third degree burns over various parts of their bodies. My husband ended up with third degree burns on his arms and legs and had to have two skin graft surgeries and a week-and-a-half long stay in the hospital. My father-in-law was also with us and sustained many burns all over his body. Although my family was able to get out of the car alive, I was the lucky one and only suffered from a couple of first degree burns on my arms. READ MORE
This past March, Starlight families were invited to a local Game Crazy store for a special gaming Great Escape during which families enjoyed a pizza party and a Rock Band tournament. All of the children had a great time, especially when the parents joined with their kids to play Rock Band family-style.
One Starlight father attended with his son, Starlight child Kiki, and Kiki's little sister. The father said Kiki had been talking about the event all week and couldn't wait to take home the Rock Band gift set each family was to receive. That day, Kiki was fighting through the pain of his disease, but he wouldn't have missed this opportunity for the world! He left with a smile on his face and with his little sister trying to carry the large Rock Band set all by herself.
Sadly, this turned out to be the last Great Escape Kiki would ever attend. The following night, he told his mother he didn't feel well and went to bed with a headache, never to wake up.
At his memorial, his father thanked Starlight for giving his family one last happy day together. He has now become a Starlight volunteer -- helping kids just like his son who just need a good day.
“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.“
Edna created a scrapbook of Starlight memories. Click here to read her scrapbook.