Hylie Atkins died last week. We're in too much shock to do anything. Following is her father's statement from the memorial service, held at St. Luke's on Wednesday.
Today, my little girl's body was laid to rest. After years of agonizing pain and the brief respite of false hope, her spirit has finally transcended the physical limitations so cruelly imposed upon her. My only comfort is the knowledge that she is truly free for the first time since the onset of her debilitating illness.
In her first few years, Hylie lived the normal life of a young child. Her existence was carefree and she knew the unconditional love of her family and friends. Even at a young age, her love of life and vigor inspired those around her. I remember the day she started school. Hylie was so excited, she woke everyone in the house up at 5:30 A.M. She was already dressed and wanted help putting a ribbon in her hair. She could barely be contained as we drove her to school to meet her classmates. A few weeks later after I picked her up from school, she asked, "Daddy, when I grow up, I want to help children like Miss Meredith. Can I do that?"
There wasn't a week that went by when I didn't hear her say, "This is best day of my life!" Such was her enthusiasm for life. It sounds so cliche, but I've watched her enter a room and everyone in it would notice her. Not always consciously - but you could tell because their postures became less tense, they even smiled more easily and often. She had this quality about her that stripped away all pretense and insincerity. Her charisma went beyond her openness and innocence, beyond the aura of confidence that surrounded her, it even went beyond the kindness you could see in her eyes whenever she smiled. It was at once immeasurable and pervasive.
When she was in the second grade, she was chosen to meet the president during a campaign stop. To this day, I'm not sure which of them was more impressed with the other. If I were a gambler, my money would be on Hylie. I had never been so proud of her.
In 2002, Hylie was diagnosed with a congenital form of emphysema. Her mother and I couldn't have been more devastated. She exhibited none of the early warning signs and she had passed the age that most children begin displaying symptoms. Her illness was immediately and devastatingly debilitating.
Even after she was diagnosed and the doctors discovered that anemia prevented a life saving operation, her optimism never wavered. Often, I would find her singing quietly to her stuffed bears or her dolls and telling them about her plans for when she was all grown up. I encouraged her and made sure to insulate her from the harsh, financial realities related to her care. When we started the first website, her story caught the attention of the local press. Hylie, despite being bedridden, personally replied to every email and letter she received. Every day, I watched her writing little notes to her well wishers. Not a single note went out without a little smiley face below her signature. Honestly, if it were me, I couldn't have done it, much less with the optimism she had.
Hylie, I wish I could stand here and tell you I kept your spirits up during the worst times. Instead, I think you did more for mine than I wanted to admit. Your light shone brightest on your darkest days. You truly are a miracle.
Hylie was always small for her age. But what she lacked in stature, she more than made up for in her unconditional love of life and her unbridled enthusiasm and spirit. Even in her darkest moments, she demonstrated love and compassion for everyone around her. After the hospital released her, I had to give her a painful, weekly shot to help keep her little body alive. Once, after her injections, I found her in her room cuddling her doll and singing softly as she bandaged its little arm with scraps of blue ribbon. I asked what she was doing and she replied, "I want my dolly to get better, so I gave her a pretty bandage for her arm."
Finding Methusalabs seemed like a gift from Heaven. After Methusalabs accepted her for their experimental treatment program and her health began to improve, she undertook the responsibility to travel around the country. She hoped that by meeting children in similar predicaments, her story would inspire them and give them hope. And inspire them she did.
Just as quickly as her miraculous cure appeared, her health took a turn for the worse. In the span of two weeks, she lost complete function in both of her lungs and her lymphatic system shut down. Despite her obvious pain, my beautiful little girl never lost sight of the other children she committed to helping. In her last days, I'm told she started writing little gift cards on blank sheets of paper and putting them with the stuffed animals in her collection. Each card was addressed to one of the children she met in the hospitals she visited. On the cards, she wrote, "You are loved. Be well."
The news of her death came from Sarah Ferguson, Hylie's primary caregiver at Methusalabs. I'm still in a fog of denial, even as I stare at her peaceful face, her hands clasped firmly over her favorite bear. She looks like she could sit up at any moment. In my mind, I hear her little girl voice, her mischievous laughter, and the little gasps of pain from those weekly injections-all commingled and repeating endlessly. I see her as she looked on that first day of school in her frilly little dress, so ready to take on the world. But I also see how frail she looked in the hospital and realize that her life was never her own. I believe she's now in a better place where little girls can play, where the light comes from the sun on a spring day, and not from an institutional lamp over her bed.
Hylie, in death, may God provide you the peace for your soul that your body never experienced in life. I love you with all my heart.
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Hylie is doing well this week. She is still on I.V., but the doctors say she should be ready to take it out any week now. Her wheezing has stopped altogether, but she's still very weak. The muscles in her chest are overexerted from constant coughing for so many months, and her legs are atrophied from all her time in bed rest. The hospital is letting her home for one or two days at a time now, but the trips tire her out a lot. Spiritually Hylie is indomitable as always. She's really excited about all the publicity and is determined to do something productive and helpful with her days out of the hospital. We finally managed to get Dr. Beaman to let us put a computer in Hylie's room. (Contrary to popular belief, kids do get tired of TV if it's all they see all day.) Hopefully, she'll find time between Bejeweled sessions to write some letters to For Hylie to thank you for all you've done.