Monday, July 6, 2009

Francesca Josephine: June 29, 2009-July 3, 2009


With the heaviest of hearts, I share the news that our sweet Baby Frannie passed away early Friday morning at Vanderbilt Children’s Hospital. She came into the world a seemingly healthy baby girl on Monday, and in so doing gave us the happiest day of our lives. Unfortunately, we later learned that Frannie was born with a rare disorder of the urea cycle, a fatal inborn error of metabolism. This disorder causes a toxic buildup of ammonia in the blood, leading to irreversible brain damage and death.

Many times, infant deaths of this type go unexplained. We are fortunate that Vanderbilt is one of the few research centers in the country working on urea cycle disorders, as we were able to meet with a team of highly trained geneticists in the field to understand what was happening. We received wonderfully compassionate care from top-notch physicians and nurses throughout the horrific process, and are grateful for that.

Our deepest thanks to all those who have offered love and support this week. Matt, Ellie, and I are experiencing the greatest suffering and grief we have ever known. We ask for continued prayers, meditations, and positive thoughts as we move through this dark journey together.

We are beginning to work on plans for a memorial service to honor Frannie's life, and will post information here as the details fall into place.

In the meantime, some have asked about tangible ways to support us and to honor Frannie. In lieu of flowers, we'd like to request that people consider making a donation to the Vanderbilt Children's Hospital (http://www.vanderbiltchildrens.com/interior.php?mid=40) or to the National Urea Cycle Disorders Foundation (http://www.nucdf.org/support_our_mission.html).

26 comments:

  1. I am so sorry Lyndi and Matt. I can't even begin to comprehend your loss and grief. My prayers are with you all. - Bob

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  2. Lyndi,

    My heart is broken with yours.

    Emily

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  3. Lyndi, I have no words. I am so incredibly sorry for your loss. You and your lovely family are in my thoughts.

    love
    sonalini

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  4. Matt, my prayers are with you and your family.

    Traci B.

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  5. Lyndi, Matt, and Ellie,

    My heart aches for you and Baby Frannie. I'm so very sorry. Praying for love, strength, and peace.

    Love,
    harmony

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  6. Matt, Lyndi and Ellie-
    I'm so sorry for the loss of your baby girl, Frannie. My heart hurts for all of you. I pray that God will keep his hand upon your family and be a pillar of strength as you go through this process.

    Praying for you,
    Angela H.

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  7. Matt, Lyndi, and Ellie,

    My heart is broken for you. Please know that prayers for strength and solace are going out to you from everyone here.

    Charlie and everyone at Netwerkes

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  8. Our thoughts and prayers are with you three during this amazingly difficult time. Even though you knew Frannie for such a short time, she is now a part of you forever and she lives on in your love for each other. Please lean on us for whatever you might need, even if it is only to know we are following your pain, remembering our own, and walking toward the light.

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  9. Matt, Lyndi, and Ellie,

    We don't have answers why Frannie had this terrible disorder. That is why my prayer to your family is to call to the angels like the song below. Your wonderful family is in my family's prayers.

    calling all angels
    calling all angels
    walk me through this one
    don't leave me alone
    callin' all angels
    callin' all angels
    we're tryin'
    we're hopin'
    we're hurtin'
    we're lovin'
    we're cryin'
    we're callin'
    'cause we're not sure how this goes.....

    Sherri S.

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  10. I can't begin to see how pained I was too read your story. I didn't know Frannie but now she is a part of my life. Hope you get the strength to go through this tough time. take care, Kalyan

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  11. Lyndi Matt and Ellie...
    Thank you so much for doing this and thank you for sharing pictures of sweet Frannie. As I said before, there are no words... no words for this... and if we could all carry a part of this grief for you, we all would. You have never left my thoughts and my prayers are never ending. all my love,
    Trish

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  12. We are friends of Jan and Dan Morrison. She told us of your loss in hopes that we had something to say/share with you. We lost our twin boys about 2 1/2 years ago. They were born prematurely to twin to twin transfusion. We had no idea that anything was wrong until I went into labor. I know you are in a daze now but if you want someone to talk to/email to/or just vent please feel free to contact me. A book I found very very helpful was Life After Loss. It goes through all the emotions that you will feel to the "t". I went to a therapist which helped a lot as well. It honestly took about a year to even begin to feel "normal" again. Each day in the beginning is a struggle. Sometimes it is a struggle to just eat. You'll feel better some days and worse others. It's a constant battle. But I am pleased to say that two years after we lost the boys we were blessed with a healthy baby boy. We have so many mixed emotions b/c he would not be here if the boys lived and yet we love them all so much. Here is my email, feel free to email me if you want. kkirk78@yahoo.com

    I am so so sorry for your loss.

    Kendra

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  13. Dearest Lyndi,

    I cannot tell you how sorry I am to know of your loss. My heart and my prayers are with you. May God grant you all the strength to deal with this pain.

    Hugs,
    Farhana

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  14. Lyndi, Matt, and Ellie,
    I hope the love that so clearly surrounds your family can help you overcome this difficult time. You are in our thoughts and prayers. Please let us know if there is anything at all we can do for you.

    Emily & Eric

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  15. Dear Lyndi, Matt and Ellie and grandparents, Knowing that you will always remember the precious moments you had with Frannie in your heart, may the moments by moments that you go through this time be strengthen by the love that others have for you from our hearts.

    Mary B

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  16. Dear Lyndi,

    I am so terribly sorry for your deep loss. I am holding you and your precious family close in my heart, and lifting you up in my prayers.

    Leslie G

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  17. Dear Matt, Lyndi and Ellie, I was heartsick to learn about precious Frannie from many of your friends who contacted us wishing to make donations in Frannie's name. On behalf of our families at the National Urea Cycle Disorders Foundation, please know that you are in the thoughts and prayers of so many of us who have traveled this heartbreaking journey, and that we are with you in spirit and sending our love and comfort for the days ahead. We are here for you whenever you need us.

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  18. The Stringer'sJuly 7, 2009 at 3:24 PM

    Matt, Lyndi, and Ellie-

    Our thoughts and prayers are with you everyday. While you may be hours away, we are holding you very close to our hearts. We were so happy to hear about Frannie's middle name, Josephine. Our only solace is that Francesca Josephine is with Grandma Jo up in heaven. We pray that you find strength and hope during this loss.

    Love, The Stringer's

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  19. Lyndi,
    I am so sorry. My heart hurts for you and your family and I am sending you love.
    Love,
    Christina Lane

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  20. Lyndi, Matt, and Ellie,
    We are so very sorry. We send you our love! Words feel so inadequate right now ...know that we are grieving for your loss, holding you close to our hearts, holding you in the light. We are here for you - wanting so desperately to erase your pain, if only we could. A big hug from our family to yours,
    Pamela R

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  21. I believe so strongly in God, that I know that Frannie will live forever in the arms of our Lord. You may have only had Frannie for a few very special moments in time – but, that time will have a profound positive impact on you forever. Never forget these few seconds you had with her and know that she felt unconditional love at its purest. There is a reason she came. We may never understand why, but the reason is there.
    Your family is blessed because she came.
    Gayle B

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  22. Matt,

    I am so very sorry to hear of what you and your family are going through. It broke my heart to hear of Baby Frannie’s passing. I know that my words are woefully inadequate in relieving your pain and feelings of loss. I pray, however, that the love, grace and mercy of the Lord Jesus Christ will indwell you, surround you and lift you up in ways only He can ordain. May the blessing of your time spent on this earth with Frannie grow in joy and gladness and peace as the days go by. Know that you are in my prayers and thoughts.

    Keith Sykes

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  23. Dear Lyndi, Matt, and Ellie,
    I'm so sorry to hear of your loss. Words are inadequate; we grieve with you and send our love and prayers.
    Katy A. and Jimmy

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  24. Lyndi, Matt, and Ellie,

    I don't know how you've managed to do it, but thank you so much for providing this avenue through which all of your family and friends can communicate our thoughts and prayers to you.

    I just wanted to let you know that I think of you every day. I look at Frannie's picture every day. And every day I pray that you are able to see a little more light at the end of this very dark and very long tunnel.

    Courtney M.

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  25. I am terribly sorry for your loss.

    -Katherine Lent
    Friend of Jen Strange

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  26. I don't know you, but I wanted to offer prayers and (((HUGS)) to help you through this tough time. I am so sorry for your loss.

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