Tuesday, February 10, 2009

Aubreys Story


Dear friends and family,


I want to thank you all for visiting this site and hope you all will pray for Aubrey and our family. Aubrey was recently diagnosed with a metabolic disease called Pyruvate Dehydrogenase Complex Deficiency (PDCD). What that means is her body does not break down sugars to create energy. It just builds up in her system as lactic acid. A few things Aubrey is faced with in having this disease is developmental delay, low muscle tone, seizures, loss of brain tissue and abnormal growth of the corpus callosum in the brain.


Previous to this diagnosis Aubrey was seen by a neurologist for a possible seizure we though she had. At that time they did a EEG which monitors the brain waves to detect seizures. No seizures were recorded at that time but it did show she had abnormal brain waves so more tests followed. They did a MRI where they found several different brain abnormalities including loss of tissue and a abnormal corpus callosum. That is what led her doctor to believe something more serious had to have caused this. Her neurologist refered us to the genetics department at children's hospital where they would do further tests to determine the source. After several blood tests and a skin biopsy and waiting a few months here we are.


There is no cure for this disease and the outcome is...for lack of better words...not good. All we can do now is pray for her and that is what I need all of you to do. For her and for us!!


26 comments:

  1. Jill I have no idea what to say. Please know that if you need anything at all Jeff and I are here for you and your family.

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  2. I'm so sorry Jilly. I don't know what else to say.....my heart is breaking.

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  3. Jill-
    No matter what the doctors say GOD is the one in control of Aubrey's future. That is where our hope must be. I am praying that God will give the doctors wisdom and discernment with every test, recommendation and decision they have for her.
    Have faith and know that our days are NOT numbered by doctors or desease, by fate or consequence; but by GOD and the plan he has for us.
    I love you guys!!!

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  4. Jill, None us know what tomorrow holds, but I know who holds tomorrow. Aubrey is precious in the sight of God and He loves her very much. We'll pray that He will show His glory by healing her, but whatever happens, He has his hands on Aubrey and will take good care of her. I love you all. Aunt Sherrie

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  5. Praying for you and your beautiful baby...Lots of love, Alisa

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  6. Jill.... I am so sad to hear this...i'll be praying for Aubrey, you and your family....

    All the best,

    Ruthie

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  7. Jill, Trent and precious twins,
    We are praying for strength for all of you! We love each of you and will be here to support you. Whatever the needs, emotionally or physically, we are here.

    Love
    Russ, Stacy and girls

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  8. I will be praying for her Jill. If you ever need anything let me know.

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  9. Hey Jill,

    I'm so sorry to hear about Aubrey. She's such a beautiful baby. I will say a prayer for you and Trent.

    Love,

    Emily Platts

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  10. Jill,

    I'll be keeping Aubrey and you in my prayers. She is beautiful. Please let us know if we can help. Stay strong!

    Joe Monahan

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  11. Dear Jill,Trent and Family
    Aubrey is such a beautiful little girl! I spent last Sunday with her and my mom, and enjoyed every minute. We are so blessed to have her in our lives. I will keep her and all of you in my prayers. Know that God will give you the strength to handle whatever you may face. Know I am here to help in any way that I can.
    With Love,
    Aunt Sandy

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  12. Aubrey...what a beautiful name for a beautiful child. May God hold you gently, give your family strength and help your doctors find a treatment or a cure as quickly as possible. God Bless!

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  13. Jill,

    My thoughts and prayers will always be with you. Aubrey is such a beautiful baby. Whatever path God has created for her is her destiny and we will stand by you in any way possible. Our deepest thoughts and prayers always...

    Jen and Eric

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  14. Jill-
    Sorry to hear the bad news. I just found out today. If theres anything i can do please call. Aubrey and family are in my prayers...

    Ashley Fisher

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  15. Jill, Trent and family,

    Aubrey is so beautiful! I wish you much strength on this road. You are in my thoughts.

    Fondly, Robyn Nichols

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  16. TRENT AND JILL I AM SO SORRY TO HEAR THE BAD NEWS BUT TRUST IN GOD HE IS THE ONLY ANWER U NEED ILL KEEP U IN MY PRAYERS SHE IS SO PRETTY I GOT TO SEE YOUR SON SO CUTE JUST KEEP LOOKING AND BELLEIVE IN PRAYERS GOD WELL GIVE YOU THE ANWERS AND GUIDE THE DOCTORS TO HELP HER GOD BLESS U ALL TAMMY CARDER DEBBIE SISTER LOVE U ALL

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  17. jill and trent just wanted to say that to trust in god cause he is the answer to your prayers. my little neice will be just fine. she is in my prayers.
    love misty

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  18. to mammy and pappy's little angel. she is in our thoughts and prayers. and god will guide you both to do the right thing so just trust in him. jodi said she loves her little cousin. and she will pray for her in church. stay strong and believe cause we all are.
    love mammy and pappy neely

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  19. We are all praying for Aubrey. Trust in the Lord. If there is anything you need let us know. Michelle and Jim Turner

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  20. we love u aubrey, and

    we are praying for you. pappy and mammy neely

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  21. We are each of us angels with one wing and we can only fly by embracing one another...thoughts and prayers to you and your family.

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  22. Jill and trent
    Believe it or not its The G
    Praying for Aubrey
    I have made it a point to pray for her everytime I think about it
    If you pray hard enough anything can happen You just have to really believe with all your heart!

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  23. hey my little angel mammy loves you so much i cant wait till you get home so we can come up and just love you to peices. jodi and pappy said hi and they love you to.aunt misty says hi and she loves you to.

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  24. I WANT PEOPLE TO KNOW I GOT TO HOLD THIS SPECAIL LITTLE ANGEL I LOVE IT GOD BLESS YOU JILL AND TRENT AUNT TAMMY

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  25. grandma, little angel. today 5-2-09 is are big day, at the pnc park on your behalf we will find a cure for your problems. we have a lot of faith in GOD to help the doctors to find your miracle, love you with all my heart. grandma debra neely. yur little coz. jodi marie says she loves you and she is still praying for you in childrens church.

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