Starlight Families Share
Eight years ago, my first child, Cassidy was born right on time at 40 weeks after a very routine pregnancy. Although it was a long labor and delivery, she finally arrived after 32 hours and was perfect…she had ten fingers and ten toes….she weighed 6 ½ pounds and had the most beautiful blue eyes. I was overjoyed! However she was shorter than most newborns, the hospital decided she needed to be checked over. So, imagine my surprise when several hours later a neonatologist told me that my perfect baby, in his words, “was far from perfect.”
Calling the diagnosis of a brain tumor “a Christmas miracle” may sound strange to most people, but to our family, we finally had a name to what was happening with our infant son, Christopher, born just six months earlier in June 1999.
Chris had cried all the time. His head had grown larger. By his December 20th six-month appointment, the doctor ordered an ultrasound for the day after Christmas, thinking Chris could have hydrocephalus (water on the brain).
About five years ago, our youngest child, Cassidy, was born with a rare syndrome called O.S.C.S. that affected the function of her heart, lungs, airway, and head. All that adds up to most of her life being spent in hospitals, my other two children feeling left out, and my husband and me feeling like we can't get a break.
About one year ago, we contacted Starlight to see if you could help and that you did! We have been able to enjoy lots of outings together through your Great Escapes program and have felt a little like normal getting to meet other families that have to deal with some of the same challenges. So I would like to thank you for that. THANK YOU!!!!!
Our family is new to your organization and I want to thank you for accepting us. Spencer is six years old now, and he is thrilled to finally belong to a group that means fun and special times for him. He was born with many birth anamolies; his main diagnosis(es) are Cloacal Exstrophy and Spina Bifida. He is confined to a wheelchair, but is just as energetic as any 6-year-old boy.
This summer we have had surgery at Seattle Children's Hospital, plus many follow up appointments and doctor visits, so the excitement of having something fun to look forward to helped block all those appointments from his memory.
So many times our trips to Seattle mean that we have to leave Spencer's sisters at home, but your Great Escape at the Woodland Park Zoo was for all of us. This was our first event with the Starlight, and our family had a marvelous time; just walking around and enjoying the zoo, together. I would like to thank Starlight for giving our family a day of fun!
It's nice to know that there is an organization that cares enough about families to give them opportunities to have fun, as a family. Thank you so much!!
A few Saturdays ago we arose at the crack of dawn to once again pack a suitcase and a duffle bag of medicine to make the 4 hour emergency trip to Seattle. We have made roughly 100 emergency trips since Trey was diagnosed at age 3 with Pulmonary Hypertension, an incurable lung disease. With clocklike precision, the kid, medicine, oxygen and clothes were in the car. But for the first time in 10 years we were not headed to a hospital Emergency Room but to the Starlight office. Trey had been invited to have a shopping spree.
Trey was so impressed by how Starlight and their wonderful volunteers and donors have made his hospital stays so much more bearable, that he decided to take on that same task himself for our little local hospital in the Tri-Cities. Trey, age 13, is raising the money and toys to make a hospital play room. His belief is: We are kids first, patients second. It is bad enough to be sick but then to have to be poked and prodded and then stuck in your bed just thinking about what will happen next.
On this Saturday, Starlight helped us with toys to stock the playroom that we hope to open by Labor Day. All the nurses and doctors in our area have a little bounce to their step in anticipation of the opening of the “Beach Club Hideaway.” Trey still has a couple more items he has to secure or raise money for, but the goal is in sight. He wants to do this because so many have done for him. He knows the absolute joy it brings to these kids when they are so sick and so very scared and sometimes so alone. It truly gives him joy to help others as people have helped us. Pay it forward!
Alex Celia's Story
Our family’s first experience with Starlight was an overnight Great Escape at the Embassy Suites in Bellevue. We walked into the pool area, not sure what to expect. Two Starlight volunteers asked our daughters to join them in the pool – they entertained our girls for the next 2 hours. My husband and I were so appreciative of the time to sit and relax as we watched our girls -- Alex Celia and Hannah -- having a fabulous time. Since that first activity, we have participated in numerous Starlight Great Escapes including dinners, Seattle Storm & Mariners games, and a Christmas cruise, just to name a few.
We have met many wonderful families who have reminded us that we are not alone in our struggles, our triumphs, our journey. We became part of Starlight for our daughters, we never expected the wonderful benefits for our whole family!
My name is Adaire and I HAD CANCER. When I was 5 years old in 2001, my doctor found it during a routine Kindergarten checkup. My life, and my whole family’s lives changed forever. 1 month into treatment, on Mothers Day, I got Spinal Meningitis and went into a coma. I awoke on Fathers Day and began another recovery of learning how to walk, talk and eat on my own. I received a Bone Marrow Transplant on August 8th of 2001 in which my oldest brother (Shane) of 12 years of age, was my perfect match bone marrow donor. Today I am 10 years old and I have had no relapse. I am a healthy young girl full of energy and life. I am thankful to everyone who prayed, donated and visited me when I was ill. I will never forget how my life was changed. I will also never forget how The Starlight Foundation brightened my dull afternoons at the hospital with fun games and gifts. My name is Adaire and I AM CURED.