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. Because her lungs were so fragile, Leia had to be isolated from all other patients. A double set of protective doors stood between her and the outside world. She couldn’t visit the playroom, see other children or even for a moment step outside her room. She was stuck in bed, weighed down by a tangle of oxygen masks, IVs and machines. Perhaps the hardest part for her mother and me to deal, though, with was watching the extreme pain she suffered every time her medication was administered – it was so powerful that it burned inside her veins.
I never considered myself to be an emotional person before Leia got sick. But as a parent, nothing is harder than to watch your child suffer and feel helpless to do anything. You try to assure your child that everything will be okay, but words just don’t help. It still brings tears to my eyes to think about how awful those first days were.
After several days in isolation, the hospital’s child life team wheeled a Starlight Fun Center into her room. I watched as, for the first time since her attack, Leia’s entire face lit up and she looked like my happy 6-year-old girl. For the rest of her stay, she was able to play her favorite video games and watch movie after movie. It may seem like such a simple thing, but those games and movies took her mind off the pain and misery and began to heal her battered spirit.
After that initial experience, Leia has been frequently hospitalized and has spent a week or two in the hospital every year as her weakened lung has made her more vulnerable to severe asthma attacks. At every stay, we count on the Fun Center to provide a bright spot during a very scary time.
The Fun Center meant so much to my family that Laura and Leia and I decided we wanted to sponsor a new unit for the hospital to help other kids like Leia. We left the ultimate decision up to Leia, and she decided that she wanted to forgo the family’s annual vacation so that we could help other seriously ill children. We are very pleased that our unit has been designated for the very ICU that saved Leia’s life. It is our hope that when other families are faced as we were with the terrifying reality of a life threatening illness, our gift will ease their suffering.