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1.15.2012

Celia Eleanor

Edited to add:  A memorial service to celebrate the life of Celia will take place at Broad Street Presbyterian Church at 4:30 p.m. on Thursday, January 19, 2012. Children are welcome as we truly hope this will be a joy filled occasion despite our sadness. If you can not be with us on Thursday, then we hope you will do something nice for someone in honor of Celia, and send a note telling us about that. In lieu of flowers we would appreciate gifts to the Batten Disease Support and Research Association or to Nationwide Children’s Hospice in remembrance of Celia.

3.7.07 - 1.15.12

82 comments:

  1. I wish there was something I could say. I know there isn't. Love to you all.
    Christy and Kelvin

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  2. My thoughts and prayers are with you and your family.
    Xoxo,
    Kerri

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  3. Heaven has gained a beautiful angel.
    My heart is breaking for you tonight. Thinking of you all and keeping you in prayer.

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  4. I am so very sorry for your loss. I know mere words can bring no comfort, but please know your family is in my prayers, and will remain there in the weeks to come.

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  5. I am so sorry for your loss. There are no words,only tears. Your family has been in my prayers for a very long time and will continue to be.

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  6. You are in my thoughts and prayers; my heart is breaks.

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  7. From the heart of one broken-hearted mother to another - I wish you peace and strength. She was and is breathtakingly beautiful. She will always be so.

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  8. I am so sorry for your loss. She was a beautiful girl.

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  9. Andy and Jenni, My heart breaks for your family. There are no words to say other than you are in my prayers. Celia is a beautiful little angel and God is holding her now. Rest in Heaven Celia!

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  10. There are no words. Just know that I am thinking of you all and hoping that Celia is up in heaven in peace, running around and chasing butterflies. Much love.

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  11. Such a beautiful little angel. Love and peace to you all.

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  12. I am so sorry. I pray for comfort and peace. . .Michelle.

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  13. when I first saw this picture a few years back I mentioned to Grandma Ro that Celia not only is beautiful, but that she looks like an old soul. I have no words that can express our sadness for you, suffice to say you are all in our thoughts and prayers. Celia will forever remain in our hears. Love

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  14. So very sorry! Continuing to pray for all of you! She is free to dance, run, and play now in heaven.
    - Cecily

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  15. Jenni and Andy, I am so very sorry for your priceless loss.

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  16. I'm so sorry for your loss. (((hugs))) to you all.

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  17. Celia has touched so many lives in her young life. My heart breaks for you all, but know there is comfort knowing she is joyfully playing at the feet of God. Love and hugs to the entire family, Linda and Dee

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  18. I am so sorry for your loss. I never met Celia but felt I knew her through your blog and conversations with Grandma Ro. She touched so many people in her short life. I continue to keep you all in my prayers.

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  19. Oh NO. OH NO.
    I have never commented before, but have been reading for months.

    I am so, SO sorry. Two sweet, brave, amazing little ones died this weekend. Tripp Roth lost his battle with EB, and Celia with Batten.

    Thankful their precious souls are free from their broken, earthly bodies - but so sad for their mommies and daddies.

    SO MUCH LOVE from California.

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  20. Celia lives on in many hearts of those she has touched. Our thoughts and prayers are with you.

    Jamie Redden

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  21. There truly are no words. My thoughts are with you and your family.

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  22. You are all in our thoughts and prayers. We love you.
    -McIvers

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  23. Jenni and Andy,
    I have followed your blog for a few years after seeing it through Melissa Riederer (her husband's (Andy)family lived on our street in Reynoldsburg and Andy grew up with my son). You are both amazing people, parents and writers. I know you have not been strong through all the steps of this painful journey but I admire how you have approached living your lives in the midst of Celia's illness. She is an angel and you are all (especially Tucker and Tollie) so lucky to have her forever with you.

    Nothing can be said to calm the ache but something must be said to share grief. I am praying for your family and while I don't have the words - there is no comfort in this insurmountable loss - yet I pray; perhaps for endurance, for rest, for the future, for God's salvation for those who witnessed your strength? I am so sorry. My sincerest sympathy and condolences for your family.

    Susan Kadlac

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  24. So sorry for your loss! Jenni and Andy you will be in our prayers for the days and weeks to come! May God put his arms around you both and embrace you and give you the comfort only he can give!
    Matt & Missy Henry

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  25. i do not know you and have never commented on your blog before but have been reading it for years. i cannot imagine the pain you are in but want you to know you are loved. my heart aches for you. i'm so terribly sorry for your loss.
    -laurie

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  26. Your family is in our thoughts and prayers. She was and still is a beautiful little angel. All of our love, the Beery family.

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  27. I am just so so sorry. There are no words...I wish your family peace and love at this time.

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  28. I am so very sorry for your loss. May you find peace during this time. Celia is such a beautiful soul. Praying for you in Kentucky.

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  29. Andy and Jenni, my heart is breaking right now with you guys. I have been sitting here after hearing the news and trying to figure out some words of comfort to say. I am still unsure of what to say other than I am praying that you find some comfort and peace through your family and friends. Know that we are all sending love and hugs to you. If there is anything I can do for you, please please please let me know.

    Lots of love,
    Kate and Ryan Meister

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  30. I am so terribly sorry for your loss. Celia was a very special little girl. Thank you for sharing her with us.

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  31. I am so sorry for the loss of your sweet child. You are all in my prayers.

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  32. I've read your blog a long time and have never commented.

    Thank you for sharing your journey.

    I wish for you at this time a peace for you and your family.

    Charlene

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  33. Oh my, I am so sorry for the loss of your beautiful Celia. Please know my heart aches for you and your entire family. You are all in my thoughts and prayers.

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  34. Thinking of you and your family. Jerry, Tiffanie & Sophia Mourn

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  35. I'm an Internet stranger. I've read your blog for about a year now. There is nothing I can say.. but please know that I'm praying for you and your family - even though she's simply been a stranger I've read about from hundreds of miles away, Celia will be missed.

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  36. I've been checking back periodically throughout the day and the messages from strangers sending their sorrow, love, and prayers to you are like stars in the darkness I know you are experiencing right now. Celia had so many who knew and loved her personally, but what an incredible gift that she was also so beloved by those who knew her only through the photos,words,thoughts, and feelings shared by her extraordinary parents.

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  37. I have read you blog since early 2009. I don't know what to say except this just sucks. This disease just sucks. I'm not angry, I'm mad, really mad that such a hideous disease can hit families at random. Just a tweek in the genetic code and there you have it. I have loved getting to know Celia and her strength. Thank you for sharing this with me.

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  38. I wish that I had words that would bring you some comfort. My heart is breaking for you. Know that her smile and strength brought joy and inspiration to every life she touched both directly and indirectly. I never had the joy of meeting your little angel but she was in my heart and will be always. Thank you so much for allowing me a glimpse inside your lives via your blog. Know that you are loved.

    ~Jen Trimble-Ellis

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  39. Celia, you taught me something in the short hour that I was able to spend with you: to never take anything for granted, and to love unconditionally. You are beautiful and will forever be remembered.

    Andy & Jenni, you and your family are in our thoughts and prayers...we will be continuing to think of you. MUCH LOVE to you all.

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  40. Words are not adequate to express the sorrow I feel for your family. Celia was an inspiration to everyone around her. I am so blessed and lucky to have met her, to have seen her beauty in person, and I will keep that memory close to my heart.

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  41. Andy and Jenni,
    I am so sorry for your loss. Celia was such a beautiful little girl. I've followed your blog for a while and I think about you often. Every time I think about Ella's red hair, I thought about Celia's. It makes me sad that they won't get the chance to know a fellow redhead. My heart goes out to you.
    Love,
    Sarah Knouff

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  42. I am indescribably sorry for your loss. Your eloquence and grace in the face of this tragedy is incredible. Celia was so beautiful and will live on in the memories of many.

    I will keep you all in my thoughts as you trudge the difficult road ahead.

    Please accept the deepest condolences of a stranger.

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  43. Thank you for sharing her precious life !
    Looking forward to meeting a fellow redhead in heaven!
    Prayers to all of your family ! Love. Sara Sheets

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  44. Oh no! I do not know you "in real life" but stumbled across your blog two years ago and have followed your journey from afar (from NC and most recently from NY). I am so so so saddened to learn that this horrible disease has taken another precious angel. I continue to pray for a cure--to honor Celia's courageous fight and that of Taylor and so many others--and now I add to my prayers comfort for your family. I sincerely hope that tonight and in the many nights to come on your journey you can experience some peace. Your daughter was beautiful--both on the outside and also inside and your love for her and hers for you (what beautiful smiles) was so apparent that even a stranger could see it through the internet.

    All my love to your whole family,
    Callie

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  45. No words except I am so sorry. Celia is beautiful.

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  46. "We shall find peace. We shall hear angels, we shall see the sky sparkling with diamonds."
    - Anton Chekhov

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  47. No words can convey the feeling of sadness that I feel for you and your family. Know that it is now that God will carry you.. for you are not alone and very much loved by so many.
    The Ranalli Family

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  48. "The people who influence us the most are not those who detain us with their continual talk, but those who live their lives like the stars in the sky and the lilies of the field - simply and unaffectedly. Those are the lives that mold and shape us." {O. Chambers}

    "Before that, I had never realized the deep and almost unearthly significance of a sorrow too deep for tears." {R. Dabney}

    Oh, Celia...

    Straining at the leash of language,

    Cathy in Missouri

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  49. As her beauty is indescribable, so is the impact her life has had on so many.

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  50. I am so, so sorry for your loss. Celia enriched and touched our lives and she will live in our hearts forever. Our hearts grieve with you-hugs, prayers and love to you all.

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  51. ((Hugs))Sorry for your loss.

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  52. My name is Janna Shelton. I am Bryan and Jenny Shelton's sister-in-law. I have followed your blog for a couple of years now. Your blog has been such an inspiration on many of my days over the years, but especially so since recently becoming Robert's (Bryan's brother) widow. Thank you for sharing your joyous times, your challenging times, and now your most unspeakable time of grief, agony, and pain. I have shed many tears for you all today over the gaping hole that has been created in your family by the loss of Celia's earthly presence. You have all been in my prayers for years and you will all remain there for years to come...

    Love,
    Janna

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  53. I'm a good friend of Molly's and have followed your blog for years. I am so saddened about your loss and pray that your family finds comfort and peace. Celia was a beautiful person and I know she is an angel up in Heaven now.

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  54. Jenni & Andy,
    My husband, Mike, was a classmate of Andy's mom in London, and we were lucky enough to meet Celia at the house in December. She is a beautiful little angel, and we're so so sorry for your loss and pain. Know that she and your entire family are in our prayers and hearts.

    Chris Cutler

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  55. So terribly saddened for you. The world has truly lost a sweet angel, who even in her stillness touched the hearts of so many. But heaven has also gained an angel, who can laugh and play and sing and do all the other things she has waited so long to do. Praying for comfort in your time of sorrow.

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  56. Wow what a sweetheart. Sometimes God's form of healing isn't the way we would hope or imagine.. May God bless this time and give you peace. You're in my prayers.

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  57. My heart and thoughts and prayers are with you in this great loss. So hard. No words to change things, only tears from a broken heart.

    Celia made a great difference and she will be missed.
    Love and hugs and prayers,
    Debi

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  58. Andy, my heart breaks for you and your family. Please know that you and your family and your precious little girl are in my thoughts and prayers.

    -Kristin Ryan

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  59. Rest in peace, beautiful girl.

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  60. Nothing anyone says could make your loss any less painful, but just know that many thoughts and prayers are pouring in from people near and far. Including this one from across the ocean.

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  61. I am truly so sorry for your loss. No words can take away your pain. Cherish your memories. You are in my thoughts & prayers.

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  62. I am so sorry for the loss of your beautiful daughter. Praying that you'd be wrapped in HOPE of the life she now has. And GRACE as you grieve. You have done such an amazing job in what you've written about her. It has touched so many!
    2 Corinthians 5:1-5
    1 Now we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. 2 Meanwhile we groan, longing to be clothed with our heavenly dwelling, 3 because when we are clothed, we will not be found naked. 4 For while we are in this tent, we groan and are burdened, because we do not wish to be unclothed but to be clothed with our heavenly dwelling, so that what is mortal may be swallowed up by life.
    Laura Perzanowski
    Richmond, VA

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  63. God bless you and your sweet angel. I'm so very sorry for your loss..

    Amy in Michigan

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  64. My sincere sympathy Andy and Jenni. Thanks you for sharing your love. Wishing you God's peace through this difficult time. Judy Vincent

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  65. Like those who have commented here, I wish there were words that I could say, that would wipe the tears away. I've read all your eloquent words as you have chronicled the life of Celia. Your words have helped I am sure others who are going through similar lives. Know that your words and Celia's life has touched many and helped others live their lives.
    The Betz family is in my prayers, know that we love you and ask God to strengthen you through this time.
    A donation was made to the Batten Organization in Celia's memory from the Enyart family

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  66. A little life that touched so many. Thank you for sharing her story with us. You are all in our thoughts and prayers during this difficult time.

    Shelley Bowyer

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  67. I stumbled on your blog a little over a year ago when I was pregnant with my first child. I have been an avid reader since then and have often thought about your family.

    You are very lucky to have this blog as a reminder of your years with Celia. And I'm sure your younger children will be thankful to have a wonderful documentary of their sister.

    My heart goes out to you and your family during this difficult time.

    Your blog has always reminded me of how important it is to have such wonderful and loving parents and siblings. Your writing captures the love and pain that you have experienced over the years. I am happy to be able to know what Batten Disease is because of your blog.

    My thoughts are with your family. always.

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  68. Joe Oliverio, et al.January 17, 2012 at 1:46 PM

    On behalf of the entire "Fishcamp Gang of Brothers," please know you are in our thoughts and prayers at this difficult time. May you find some comfort in knowing your little Angel is actually now an Angel in Heaven and at peace. Thank you for sharing her with us.

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  69. I am so sorry to hear about Celia. I learned of your family though volunteering for Pleasure Guild. Since finding your blog, I have been amazed by your words, your strength and love for Celia. She was truly special and touched so many lives during her very short time. I will light a candle for Celia tomorrow and pray you and your family find peace during this difficult time -
    Toni Bloomfield

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  70. Jenni and Andy,
    I wish there was something I could say, but I have no words. My heart aches for you during this difficult time.
    Thank you so much for sharing your story. I am praying for you all.

    Much love,
    Sarah Whitney

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  71. I have been following your blog for years, sent here from The Vaudt family. My heart breaks for you. That sweet little girl with the amazing curly red hair is free to run and dance and sing in heaven. It's hardly a fair trade. But you have a priceless guardian angel now.
    My thoughts and prayers will continue you to be with you.

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  72. God has plans for each and every person and we never know God's plans. I can't begin to imagine what you two are going through at this time. I pray that God will give you strength and later peace with this. Celia is a beautiful young lady! I'm sure she is hugging on Jesus at this moment! Give him a big hug from me Celia!! My prayers are with you and your family Andy during this time!
    In His Love,
    Neighbarger

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  73. I know there is nothing that any of us can say to your family to make any of this easier. I feel much more educated about this disease from your blog. All I can say is that God has gained one special young lady that can now run and play like never before. I am sooo glad that she was able to meet Tollie and you had those great pictures of your entire family. God bless Andy and Jenni.

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  74. Jenni and Andy,

    I have been following your blog for years and, as many others, am at a loss for words as I cry for your family right now. I have been absolutely amazed at the strength of your family and the love that surrounds it. Praying that God will keep you under his wing and that Celia is watching down on her precious family.

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  75. Andy, Jenni, Tuck and Tollie,
    I am so sorry for the loss your wonderful family has to feel. We haven't talked in years Andy but I have always thought of you guys and read your stories. She was so very perfect.
    -Beth Paul

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  76. Caroline, Laura and I are thinking of you. Take care.

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  77. I also have never commented on your blog, but have been following it for some time. I lost my niece Nikki to Batten's 20 years ago at the age of 8. Celia reminded me so much of Nikki. My thoughts and prayers are with you.

    Marsha

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  78. As I read your blog, it became quite evident to me why the two of you were given Celia to love and cherish during her short time on this planet. So many lives have been touched by the strength, grace, courage and love that you and Celia have displayed. Thank you for sharing your story with all of us, and for reminding us that love is really all that matters in this hectic world we live in.

    I am so very sorry for your loss. Your family will remain in my prayers.

    Jennifer Dixon

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  79. jenni, andy, tucker, and tollie,

    i've been attempting to find the right words to leave for you in this space for the past 36 hours. i keep coming up empty-handed. words are an insufficient means of communicating the intensity of your love for your beautiful celia, the magnitude of the loss your family must endure, and the impact your daughter's little life has had on the community. through the seeds sown by your vigorous advocacy, diligent blogging, and ardent love, celia's legacy lives and batten disease is no longer a silent struggle, another rare and orphan disease to be suffered by someone else. celia's legacy will not simply persist. it will thrive. she is forever committed to my memory and imprinted on my heart. thank you for sharing her with me. your family is in my thoughts and in our prayers during this season of sorrow.

    ~ morgan-amanda f.

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  80. Bless your sweet family. I'm so sorry for your loss. Praying for your family

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