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Loving and Devoted Father
By:Jaymee Godfrey
The loving and devoted father of three children that I called dad is now just a memory that will live with me forever. A man who always did for others and never expected anything in return. I have been given the opportunity to share with you who this man was. A single parent on a mission to change the world, only his world had already changed without him knowing it.

My father, John Eugene Godfrey, died of Adrenoleukodystrophy at the young age of forty-six. This dreadful disease took his life before he could walk his daughter down the aisle. Before he could see his first grandson be born. Before he could see his daughter graduate from college. Before he could see his son become a man. So many things were taken from my father. In writing this, I hope that others will understand just how difficult ALD can be.

Jaymee Godfrey

Pee Wee
By:Maria Carlo

Our family is morning the loss of our dear brother and my brother-in-law Jose a 42 year old man full of life and goals. Within a year of being dx with ALD he has lost the battle against this terrible condition. Exactly as the medical journals said it took away all of his abilities the once many of us take for granted, first was his ability to walk , then the sound of his voice changed and within three month his voice was gone and lastly the ability to swallow any food. But through all of this he never gave up he fought it till the end. We really never had the chance to know if he did his research on such devastating disease. Furthermore, because of his dx we came to find out that the oldest brother Luis had died many year ago of this same condition, he was only seven years old when he lost his battle with ALD.
Nevertheless, now I continue this devastating battle with my husband. we have been married for 23 years his name is Adalberto, who is 45 year old. We are starting to see the effects of this condition slowly taking his ability to walk. This is the man that I planned on growing old with, but I guess destiny has a different plan. Since we know that there is no cure for this condition. So know I am trying to keep it together, pray and hope that we have just a little more time. That perhaps he could be one of the miracle,but he has been my miracle all these years. So, overall I Thank GOD for the years he has given us and our boys

Every Day I Remember You...
By:Shari Jill Abelman Spitzer
Alan Reed Abelman, Greg Stuart Abelman, Pauline Kaye and Sandee Abelman - my brothers, my grandmother and my mother - taken from my life far too soon. Every day I remember each of you - every day I am reminded how lucky I am to have had you in my life and how heartbroken I am to have lost each one of you.

Alan, my older brother, the one I only have a few vivid memories. I know you loved me and that I loved you. Although I can't remember the sound of your voice, the warmth of your hugs or the brightness of your smile, I can see your handsome face in my memory and hold you close in my heart. And every day I have those few memories and I remember you.

Greg, my younger brother, my best friend, my shadow, my favorite person in the world. I have thousands of memories of you - I can still remember your laugh, your voice, your sweet scent, the softness of your skin and hair and your gorgeous huge hazel eyes. I remember how we played, how we laughed and how we'd sing. I remember how we'd fight and make up with a hug and kiss. I remember always whispering in your ear every night how much I loved you. I remember your wit and humor and I remember how you lit up a room with your happiness. I remember how much it hurt watching you fade away, how I longed to hear your voice and watch you run. I remember how hard it was to remember you and how long it took to smile again when you weren't with me anymore. How overwhelming the emptiness and silence felt. How I wanted to die because you couldn't live. I never thought I'd smile again or be able to remember you without the pain of missing you. Then, one day I remembered and from that moment on I make myself remember you - I think of you and talk about you and smile when I say your name and remember what a precious gift you were to me - and now those memories are my gift - they are mine as you were mine - I never had to share you with anyone. I was your only sister and you were only my brother. And now I can share those memories with anyone who wants to know about them. I will love you all the days of my life and every day I will remember you.

Pauline, known as Ma to me. You were the most beautiful person I ever knew. Your heart was filled with more love and dedication than anyone else. You showered me with devotion and goodness. You gave of yourself and never expected anything other than my love in return. You took care of me and taught me valuable lessons. You taught me to love unconditionally, to share my heart and to live my life always showing those I loved how much I loved them. You taught me how to read and how to sew. You always took pride in your home and your appearance and your dedication to your family. You always had one wish for me - that I would meet a man just like Poppi - someone who would always love me and be devoted to me and provide for our family. Someone with a good heart and a good job! You were the best role model - the woman in my life I wished to be most like - the one who loved without limitations. I was blessed to have you in my life. I wish you could have stayed longer, you were taken away far to soon, you weren't ready to go and I wasn't ready to lose you. I still feel so much sadness when I think about how much I miss you and my heart still aches. Thank you for loving me and for bringing so much goodness into my life. I have so many years filled with wonderful moments to remember. Every day I remember you. For always I will love you.

Sandee, my Mommy. Ours was a complicated relationship. We weren't best friends, we didn't always like each other, but underneath our stresses and struggles there was always love. I didn't aspire to be like you, just wanted you to make me the most important part of your world. I always knew that I wasn't. My brothers were. You lost them and nothing and no one would ever mean as much to you. You were selfish, putting yourself and your needs before anything else. I understood why you were this way, but could never accept it. You disappointed me most of the time because I wasn't a priority, I wasn't at the top of the list. I couldn't be the oldest or the youngest, I was right there in the middle, all alone, sad and angry for so many things, so many disappointments, so much heartache. And then you got sick. Life was already so unfair. You lost your brother to this nightmare, your two sons, your mother and now you were being tortured by it and I was being forced to witness all of that. I struggled daily with having to make so many decisions. For 10 years I watched as you deteriorated. Helpless and angry that this was happening all over again. Hadn't I endured enough losing two brothers and a grandmother. And then I was losing you. I wish you had apologized for all the let downs. I wished you had apologized for not making me your number one. I wish you had apologized for not taking every chance to make my world better. I wish you had apologized for not loving me as much as you should have. I was your only living child, your only daughter. You should have let me know that I was special and that I deserved more. You asked me to end your life and if I could have without repercussion I would have helped you without hesitation. But I couldn't. I was left with making the most difficult decisions. Watching you suffer in excruciating pain, watching you become paralyzed, watching you wither away to a broken shell and then watching you die. I was destroyed because I watched this nightmare happen again, I watched my Mommy perish. I'm sorry that we weren't better to each other that we didn't find common ground and that I carried with me so much resentment. I'm sorry that I still don't really miss you - I'm waiting for that moment to come when I finally miss you. But I think of you, every day and I remember you and I will remember you all the days of my life.

For always I will love each of you, with all my heart. And I will never, ever forget.


In loving memory of Rita Carroll
By:William Carroll
Rita Carroll...a loving and caring wife, daughter, mother and grandmother. She worked every day to make the world a better place for all. No matter what she was going through she always wanted those around her to be happy. Her beauty, smile, laugh and generosity were second to none. She will be dearly missed.

Austin Wyatt Truman
By:Vickey Brown
11/27/98 - 9/13/2004

My son was such a wonderful little boy. He loved to ride his bike, listen to music and play video games. He was diagnosed with adrenoleukodystrophy in May of 2004 and died just 3 1/2 months later. The disease was very aggressive and it broke my heart to watch him deteriorate so quickly. I have another son who was 9 years old when Austin passed away, we have had him tested several times and he does not have this disease and we thank God everyday that he doesn't. My heart goes out to everyone who has ever had to experience the wrath of this terrible disease and pray someday there will be a cure.
Tu Tu we love and miss you so much there is never a day that passes that we don't think about you. It gives us peace knowing you are healthy, happy and just waiting for us in heaven.
Love Always and Forever,
Mommy, Dad and Dylon

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