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What a Beautiful Page. I'm so sorry for your loss. With this common bond we share, I know your feelings. God bless you and your family. Hugs, Michelle & Kelly Blades
Michelle Blades <>
Walker, La USA -
What a touching story, I'm so sorry for you loss. They say God has a plan for all of us and we are mearly on a journey. Why does it have to be so hard some times. Bless you all.
Bill Leeker <>
Chesterfield, MO USA -
HI, I guess I never ready your story before I am almost ashamed to say! IT is so-o- beautiful. I cried, am still crying. WE all have been through so much pain, mixed with bittersweet joy! We all have learned special gifts from our children, they have taught us well. It always amazes me how our beautiful children could teach so much without ever speaking a word. I know that silence is God's first language, maybe that's part of it. Trevor's story is the one I have found to be most similiar to LeA. Just wanted to let you know I read your site, it is beautiful and I am thankful to you for posting it at for all to read. Love and Hope to you all this Christmas Micki
Micki Gartzke <>
Shorewood, WI USA -
I am sending all my love to you. I had a teacher with a child with the same disease. i have know this site for a while but i haven't been here lately. I am so sorry to hear about Trevor. This heart-warming story has really touched my heart. Stay strong!!!! With lots of prayers, Betsy Martin
Betsy Martin <>
Andrews, sc USA -
I was researching my family history and typed in our last name Krabbe. Up came tons of info on the disease. I never knew and I am truly sorry for your pain. Trevor sounded like a wonderful child.
amy dacosta <>
Chicago, il USA -
I am so overwhelmed by your beautiful story. I too lost my precious son just two months ago on June 23 (he was exactly 11 months) but the difference is I am still waiting for results and it is frustrating. The situation sounds so similar I just had to write. May God send Trevor to say Hi to my son Skyler. Peace to you and your family. Linda x
linda Mansi <>
massapequa, ny USA -
Thank you for sharing your story. What a wonderful tribute to Trevor's memory. I've met Zac at Solace House and think he's an incredible little boy. Trevor certainly had a great role model! I wish your family the best.
Sheri Barker <>
Pleasant Hill, MO USA -
God Bless you for making this website for your lil angel! The story is beautiful. My nephew Dylan was diagnosed with Alexander Disease, which from what I've heard is similar to Krabbes! My sister is Kathy Freeman. I think you two have contacted each other! She told me about your situation and how helpful your story was to her! I thank you for the story. You are very strong!!!
Suzanne <>
Lakeland , FL USA -
God bless you for sharing your experience and your loss and your love with the rest of us. I have just learned of this disease as my cousin's grandaughter (Leandra Frye) has been recently diagnosed. I find the disease itself overwhelming, but I find the open arms inspiring.
Sue Kirkpatrick <>
Champaign, IL USA -
Sorry to hear about your loss My heart goes out to you. My daughter Marwa has Krabbes and with all that I treasure every single day she is with us. love to all of you Rima
Rima <>
elcerrito, ca USA -
Happy Birthday to Trevor!!!! I hope you embraced each other and felt his love all around you. Sorry, I am a day late. Much love, Erika
Erika Sears <>
Seneca, sc USA -
We are very sorry about the loss of your son. We were doing a science project for school when we came across your story. It brought tears to both of our eyes. I hope you have recovered okay.
Michelle Murphy and Courtney Conner <>
Spindale, NC USA -
I've read your story and i'm very heartbroken to hear that your son passed away after such a long struggle.Yuor little Angel is now in Heaven with all the other special Angels so don't feel sad be happy that he is in a better place.
Angel Liggins <>
richmond, VA USA -
Hello.. You do not know me either but I am a friend of Ellie. I came to this page and was in tears. I understand somewhat of the grief you are experincing.... my best friend, Brittany, died @ the age of 13 about 5 weeks ago. Though it's not my son or my relative, she was like a sister to me. I know how hard the grieving process can be. I want you to know my prayers are w/ you and please remember, though Trevor may be gone in a physical sense, he is always in your heart.
Chelsey <>
Topeka, KS USA -
What an angel Trevor truly is. For the joy is seen within his eyes. God bless you all. I will follow your advise and get Johnathan in to KU for a second opinion and let you know what we find. Thank you for your strength, for it truly helps me help my son. Tonni Brende & Family
Tonni Brende <>
Independence, MO USA -
Hi Michelle, I know you from the message board.Somehow never got time to spend to explore .I saw this site for Trevor for the first time.Its presentation is wonderful.We lost our beloved daughter Kinnari on 26th March 01.I am still under shock . Kusum Gala.
Kusum Gala <>
Fremont, CA USA -
Billy Bob and Michelle, I think everyone who has signed this has already said how I feel and think of the both of you. I just wanted to let you know that we love you and think of you often. Hope your little get together (with the newest family)is as wonderful as I hope it will be. Take care, Erika
Erika Sears <>
Seneca, SC USA -
Excelent website. Very good job of teling his story and describing all of the events that Trevor and your family went through. God Bless.
Brandon Newell <>
Kansas City, KS USA -
I read your story on the website. I wanted to let you know how much I admire your strength and grace in such a heart breaking situation. I thought of you all often, especially over the holidays. I was glad you had Christmas together. You are in my thoughts and prayers.
Liz Wells <>
Topeka, ks USA -
Hi Michelle, Bill and Zac...I miss you guys. I just wanted to let you all know, that I am thinking about all of you, and hope that you are doing okay. I believe in my heart that Trevor is having the time of his life! I worry that he may get a tummy ache eating all the pizza, hotdogs, candy etc., but then I realized that in heaven he wouldn't have to worry about in my prayers, I tell him to eat all the junk he wants! I also know that being your child he is more than likely, helping the other kids and organizing their games!!! He had wonderful role models regarding the importance of love, strength, courage and trust. I have know doubt that he is showering his new friends with kindness and love. (and watching over all of you) Trevor will forever be in my heart and prayers, as well as each one of you. Love you, Melissa
Melissa Cerveny <>
Casselberry, FL USA -
Bill and Michelle, You do not know me, but I have been following your family's story closely and have been so touched by the strength you all have shown. I am a good friend of Jackie Craig and we also have a connection because Bill helped Mark Brown with our house plans(we are building west of Baldwin). Jackie kept me informed of your story and my prayers have been with you all throughout this time. I found the Krabbe website when going online to learn more about the disease. Finding your family's story was a bonus and I am so glad I did. Trevor was such a lucky little boy to be born to parents such as you and also to have a wonderful big brother. You all faced the situation with courage, strength, and dignity. I was so touched by the way you all lived each moment with Trevor and cherished each second......all parents should remember to do this with their children because life is too short......only God knows how much time we have together and all too often we take our loved ones for granted..thinking they will always be there. Although losing Trevor had to be the hardest thing in the world, knowing this brought you to cherish every moment with him....he surely knew how loved he was. Thank you for sharing Trevor's story and for reminding me how precious life make the most of the time I have with my children. I hope that one day we might meet face to face so that I can give you both a great big hug and tell you that Trevor's story has made a big impact on those who have heard it. Peace, Shelly Todd
Shelly Todd <>
Lawrence, KS USA -
Your story about Trevor overwhelmed me and made me cry. Because I'm going through what your family had to go through. I recently had a healthy baby boy born Nov.13th, 2000. I and the father decided that giving the baby up for adoption was the best thing for William Hunter Mitchell. So I picked the best family ever!!!! I'm sure you know them Rick and Lorie Mitchell. I got a call on the 27th of Feb. saying that my son was in the hospital dying. I rushed to KU MEDICAL CENTER to see Hunter before he had passed on. They still weren't for sure what Hunter had. So I went home that same day crying cause my son was in the hospital suffering and in pain everytime you moved him he would cry for help. That following Saturday I was getting ready to go out of town and I got a phone call from his doctor in Kansas City, saying he is hearing impaired and he has less than 12 months to live. I just bursted into tears. I'm only 19, I didn't think that my son has a disease and wll be passing on. I feel bad because I wanted Hunter to have the best family and life that money couldn't buy. He still does but it's not the same. Rick and Lorie are so nice and sweet I don't know what to say. But the best thing is that Trevor will have some one to play with and hopefully that they become best friends and buddies. I hope that Trevor and Hunter will meet lots of wonderful kids that has passed on with the disease. Well I'm glad that I got to talk to you and hopefully get to talk again. I'll put your family on my prayer list and pray for and with you. In JESUS'S name AMEN.
Patty McFeeters <>
Salina, KS USA -
God Bless your family. I pray for everyone every day and night, so I will just add your family to my prayers. I am a student at Spring Arbor College. I am taking my last class for my BA degree. The class is biology with a lab. One of the assignments was to find a disease and write about it. I was surfing the web, because I was going to do my paper on kidney disease or glaucoma. I happened to run across Krabbes Disease and started reading about it. Funny how life does things. I used to care for children at a home,in Chicago, named Misercordia Home. There were children like Trevor, but I never knew or understood what was wrong. I just took care of them and loved and talked to them. Little did I know, years later that I would be reading about this illness. Oops, I forgot to tell you my name. Duh!! It is RoseElla P. Lyke, I live in Kalamazoo, Michigan. As stated earlier I will be in prayer for your family. Remember, not only does God know best, He KNOWS what he is doing. God Bless you all.
RoseElla P. Lyke <>
Kalamazoo, MI USA -
Hello- I am a longtime friend of Carol Harrison Murray, way back to Lamaze classes and LaLeche League, some 27 yrs. ago. She gave me your E. mail address and told me to read this heart wrenching story and your willingness to share your love, joy and sorrow. You are all in my prayers and thoughts. Least we not forget how fragile and short life is. Blessings to all of your family and friends! Linda
Linda Stevens <>
Wichita, Ks USA -
Bill, Michelle and Zac, God has truly blessed you with a sweet, precious and special gift, your Trevor. Trevor not only blessed your lives, he also touched many others. He enriched your faith in God and in each other. Trevor is no longer in pain, no longer struggling. He is with God running, laughing and smiling down upon all who was touched by him. Our thoughts and prayers are with you guys.
Steve & Roberta Knecht
Overland Park, KS USA -
Dear Bill and Michelle, Little Trevor is now in heaven, playing, laughing and doing all the little boy things he missed up to now. Although he was sick most of his life, his life was lived with such dignity. That was because of his parents. Thank you so much! This is such a hard time. The difficulties are over, but the sadness is so heavy. Please take care of each other and Zac. Love, Dad and Mom Leeker
Grandpa and Grandma Leeker <>
Wichita, ks USA -
Thank You for sharing. My granddaughter, Courtney Jo Rutherford is also on the Krabbes site. She passed away in April, Easter morning, 2000. Her father, my only son who was 28 also passed away 4 months after his daughter Courtney due to a motorcycle accident. We miss them both terribly! Your family is in our prayers. Thank God we were able to have the presence of these children in our lives. Mary Lee
Mary Lee Rutherford <>
Uniontown, Pa. USA -
I work with Trevor's Grandfather and have been following Trevor's battle with this terrible disease. Your journal is an incredible account of the strength and love your family has. Your family is in our prayers.
Darren Minks
Wichita, KS USA -
Thanks for the wonderful site. My mom does in home daycare and takes care of a little girl who has Krabbes diease and from sites like yours we learn alot. Thanks.
Cassandra <>
Madison, WI USA -
Michelle and Bill- I just read the journal entries. Those were some really beautiful pictures of Zac and Trevor together. That makes me sooooo happy to see Zac smiling just because Trevor is here. Its amazing that he can treasure every moment. It seems so simple in his mind, if only it could be that way forever! Give both of 'em a hug for me! Love always, ~*~Ellie C Madl~*~
Ellie Madl <>
Lawrence, KS USA -
I'm doing a report in science about genetic diseases and i looked up your sight and read your story and i found it to be very sad and it helped me learn a little bit more. thank you and im verry sorry that this happend to trevor.
Ashley <>
gillette, wy USA -
wat een gekwijl maar toch veel plezier in het leven en succes Love Simon
simon <>
utrecht, holland -
I wish for the best for u and ur family, and will pray for you. Keep your faith!
Jenny Whitney
Trevor is my nephew and he has grabbed all of our hearts. He is so precious you can't help but fall in love when you meet him. Just to see his eyes looking for you when he hears your voice means so much. I love you Trevor.
Tiffany Madl
Michelle, Matt Whitney talks often of Trevor so our family has kept up on his condition. Your story is so touching and I admire how you have coped with all of this. Our prayers are with your family.
Sharon Whitney
Ashley <>
berkely springs, WV USA -
Michelle, Bill, Zac, and Trevor, I just read Trevors story and even though I am involved with the case medically it still brought tears to my eyes and a prayer to my lips. You are truly picture to go along with the definition courage and love. I plan on going home and sharing Trevors story with my 2 children so that they may include all of you in their nightly prayers. God Bless you all!
Lisa Whisenant <>
Gladstone, MO USA -
Your website is wonderful! I have to say it was very touching. Just wanted to say that I will keep all of you in my prayers.
Candra <>
Canton, NC USA -
Leeker family - Bill, Michelle, Zac, and Trevor. Your family has touched me in so many ways - I feel priveleged to get to work with Trevor and your family every week. I have learned alot in Trevor's physical therapy sessions. My heart is full of love for each one of you. Trevor has added a special way of communicating to my life. love meg hubin
Meg Hubin <>
Baldwin City, KS USA -
Michelle: It's taken a while to get through Trevor's site... It really amazes me, how strong you and your family are! I often wonder how one family can have SO much strength. I am very grateful to have you and your family in my thoughts and prayers. Joe and I think about you alot, I wished there were more ways to show it. YOU AND YOUR FAMILY ARE SOOO SPECIAL!
Jenny Sanchez <>
Lawrence, Ks USA -
Hi to all of you, I just checked my mail after a LONG time and opened the site. You know how much all of you mean to me and it's amazing to me the way that you are able to reach out to so many during this time that is so difficult. I want you to know that I think of you every single day and are keeping your whole family in my prayers. I feel that each day is so terribly busy with the to do lists that I need to take a lesson from you and stop to take time to let those that are so important to me know that I love them! Please tell Zac that Suey loves him and I would love to see all of you more often! I'm really going to try to do just that. Give Trevor a kiss and hug until I see you! Mindy is here with me and sends her love too! God bless you all with his love and strength! -Sue
Sue Brown <>
Baldwin City, Ks USA -
BILL, MICHELLE, ZAC AND TREVOR - We love you all dearly! Wish we could be there with you daily to help you and provide added strength. Michelle, I am so proud to be able to say you are my sister. You and Bill have such an incredible bond and support system for each other. We all think of the four of you daily! As I hope you know, you can call anytime for anything! We just love hearing from you! Tell Trevor we love him!
Cindy Garrett <>
Columbia, MO USA -
Its so good to hear that Trevor is feeling more comfortable, Thanks for the updates,I hope you continue to share how Trevor and yourselves are doing.All the best to you and your beautiful family.
Ann Pitra <iidoc>
downers Grove, il USA -
Hello Michelle, Bill, Zac & Trevor...I LOVE ALL OF YOU!!! The journal is brought tears to my eyes. I continue to learn about strength, courage, self determination, love and friendship from each of you. I am so blessed to have all of you in my life. Love you all, Melissa
Melissa Cerveny <>
Wichita, KS USA -
Michelle, You have a special gift from God that only mothers can have, unconditional love. Your sacrifices for your family are awe-inspiring. You are a mentor to us all. God Bless you and your famiy. You remain in our thoughts and prayers, Wendi
Wendi <>
Lawrence, KS USA -
Our family feels so blessed to have been part of Trevor's life and we are always amazed with your family's strength. We pray for Trevor every night and think of him all the time. We love you all. Mike, Rachal, and Gypsy
Mike, Rachal and Gypsy Ratzlaff <>
Lawrence, KS USA -
Michelle, you are such a strong person and I admire you VERY much for that!!! I really miss working at Kennedy and keeping in touch with everyone! I also wanted you know that you are in my prayers! Travis
Travis Williams <>
Lawrence, KS USA -
Michelle, What I admire about you is how you treat everyday as the beautiful gift that it is. You're often in my thoughts, and always in my prayers!! Your courage, strength and wonderful outlook on life is amazing!! Your have a loving and beautiful family. Thanks for sharing yourselves with me!!! Kisses to my Zac man!!! - R
Ronna von Knorring
Lawrence, KS USA -
The word that comes to my mind when I think of your family is courageous. Thanks for making me a part of your courage! Love you so much!!
Linda Wolf <>
Lawrence, KS USA -
Wow! What a beautifully expressed journal of your experience. Your strength, love, commitment, and faith are truly amazing. Every day I am amazed at the strength and love blended with your humor in dealing with this painful event in your life. Michelle, you and your family are in my prayers always. Zac and Travor are truly blessed to have you two as their parents!
Maria Pope <>
Lawrence, Ks USA -
I'm so glad to have read this. It's so loving and informative! It was good seeing you guys last weekend and meeting your wonderful family, wish I would have know the right questions to ask to learn more from you!
Lori Walker <>
Plano, TX USA -
Look's great, I wonder if I can get the same person to do this for me. Hope you guys are all doing well.
Erika Sears <>
Seneca, SC USA -