In Memorium

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.


My Stay at Methusalabs
From Hylie Atkins

Hi everybody!

I'm still here at Methusalabs and just wanted to let you know that everything is ok. I have my own room with a pink bed, lots of toys and a computer!

I've just started the genetic treatments and so far they aren't so bad. The injections do hurt really bad because the needles are so big, but I just close my eyes and squeeze onto my bear really tight until the needle is out. I usually feel better after an hour or two. Mostly they just make me really sleepy. The nurses say it's because my body is fighting so hard.

The nurses are really nice to us. I think they feel bad that we all have to stay here for so long without our families. I tell them not to feel so bad because I've made lots of friends since I've been here and I'm going to be healthy forever and ever when I'm ready to leave. I think they're supposed to follow a bunch of rules, but most of the nurses break them. I always always get an extra scoop of ice cream if I give my biggest smile and most of the nurses don't even notice when we all sneak into each others rooms late at night. We've been telling super scary ghost stories! Lucian always tells the scariest ones. The other night he told us a story about a ghost pirate that was so scary I had to hide behind Kaitlyn and plug my ears until he finished!

I miss everyone at home soooooo much. The worst part is missing my family. I miss my Mommy and Daddy. I've been writing back and forth with my mom, but it sure would be nice to hear from the rest of you back home!

You can email me at I'll be waiting!




Going On A Trip
From Hylie Atkins

Hi everyone! I wanted to write you a letter to say thank you for all your emails! I've read every single one! I'm leaving tomorrow morning to go to the Methusalabs hospital for some gene therapy. Methusalabs saved my life before and I know that the treatments I'm going to get will help me again.

I'm really going to miss my family lots. My mom has been kind of sad lately. I think she's going to miss me lots. I drew her a little picture so she won't forget what I look like. At least there will be other kids there with me. That'll be fun, I guess. We get to go to school together and everything. I hope Methusalabs will help them just like they helped me. These other kids are super special so I picked out eleven of my most special bears to give them when I get there. I hope that having their own bears to hold on to late at night will make them feel better.

I think I'll have some time to write some of you back while I'm there!



Note: Hylie wrote this before she left on Sunday. She asked me to post it for her so all her friends would know she's ok.


Hylie Vigil
From Mrs. Atkins.

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.
Hylie in the National News
Hylie's Revolution Discover Magazine
Ribbons for Hylie
Sick Child Gives Other Kids Hope Gladewater News & Globe
Other Writings
Is This a Miracle? by Sandra P.
Hylie's Speech by Hylie herself!
Hylie's Favorite Messages from those she inspired!