Thursday, October 9, 2008

Let's start from the very beginning


March 1, 2006, our third child, Emma Elizabeth was born. She was born on her due date, a normal baby girl, and our biggest at 8.3 pounds! She grew and developed normally and had the cutest personality. Emma loved chasing her brother and sister and would stand at the bottom of the stairs on the “safe” side of the baby gate and holler for them if they weren’t downstairs playing with her. She climbed like a mountain climber, feared little of nothing and ran around the house all day opening cabinets and getting into everything. She wore me smooth out most days. She loved to clap, sing the “Itsy, Bitsy Spider” and “Twinkle, Little Star,” and loved to run up to her daddy at the end of the day when he returned home from work. Emma gave great hugs. Around the end of 2007 though, we began realizing she wasn’t responding to us when we called her. She was also beginning to fall a lot and was clumsier than normal. She had an independent and spunky personality, so part of us thought the lack of response was due to that. However, she literally only had a couple of words and was not communicating as a normal two year old should. After calling the pediatrician and discussing these things, we were sent for a hearing test.
I would like to add as a side note that it is important to be an advocate for your child. You, not the doctors, are the one who is with your child all of the time, and you are the one who knows when something isn’t quite right. Follow your God-given instincts, and follow through, even if you’re told there’s nothing wrong. Keep insisting on tests, or whatever it may be, to help figure out what the problem is with your child.
So, we were sent for the hearing test, and Emma responded as a 4 month old! We were told she had fluid on her middle ear and needed tubes. The ear doctor felt certain Emma would begin speaking soon after having the ear tube surgery, but also suggested she may have other developmental delays and recommended an evaluation with Early Childhood Intervention.
Early Childhood Intervention (ECI) is a program provided by the State of Texas. It’s called different things in different states, but from what I understand, just about every state has a program similar to ECI. They will come to your home and evaluate your child’s developmental milestones. This evaluation service is provided free of charge, regardless of income. After the evaluation, if the therapists determine your child is eligible for their services, there is a charge on a sliding scale based upon your income. The things we learn! So, ECI came to the house and evaluated her. We were mainly interested in speech therapy, of course. After their evaluation of Emma, they informed us she was developmentally about a year behind but encouraged us that she would receive the therapy she needed to catch up. There was a lot of praying and searching for a speech therapist at that point, because ECI had a waiting list for speech services. There are so many needy children out there! (If you’re looking for a career or career change, speech therapy, physical therapy, or occupational therapy are great fields and in very high demand.) God finally provided the perfect fit for our little one through Michelle, her speech therapist. Emma also later qualified for developmental services, physical therapy, occupational therapy and vision services. Emma loved her therapists even when they made her work harder than she wanted. We were so blessed to have had so many therapists who loved Emma and provided the best care possible for our little angel. Unfortunately, the temporary hearing loss was not related to Emma's eventual diagnosis. How I wish the tubes and speech therapy would have been what Emma needed to get her on the right track.

A couple of months later, we noticed Emma was having what seemed like seizures. In April 2008, we took her to Texas Children’s Hospital, where we met with the neurology team. After their evaluation and hearing Emma’s history, they informed us they thought she probably had some form of Autism or Rett Syndrome. We would do an MRI and chromosome testing to confirm. Of course we were devastated by this news, and cried out to God along with several friends and family for her healing. God met us where we were and provided what we needed, mainly calm and sanity, as we waited for the results. The neurologist called at the end of May and informed us all the chromosome tests came back negative! We praised God, but still had questions and were confused as to why she was not progressing, but rather continuing to regress. At this point she was having in excess of 50 seizures a day and losing more developmental milestones.

In June, we saw the neurologist again. He noted her decline since he had seen her in April, and referred Emma to a pediatric ophthalmologist. He was concerned about her vision. The ophthalmologist looked at Emma’s eyes and determined there was some sort of irregularity with her retina with some retinal dystrophy and referred us to a retinal and ocular genetics specialist. Later that same day the neurologist called to inform us he had seen the ophthalmologist’s notes and wanted us to know of a diagnosis he thought we were probably facing but needed genetic testing to confirm. He said it seemed Emma had a rare degenerative genetic disease known as Neuronal Ceroid Lipofuscinoses (NCL), also known as Batten Disease. We asked for a recommendation for a reliable website to research what in the world NCL was. We found that this disease is characterized by progressive mental and motor deterioration, seizures, blindness by age 4, and early death usually around 5-8 years of age or younger for the type the doctor was concerned about. There is no cure. Usually the child is completely normal from birth to about 6-18 months, when literally, out of the blue, the disease becomes active and takes over. What?! Both parents have to have the defective gene in order for the child to be affected. Wow, what are the odds? Something like 1 in 800,000 actually. Why? I don’t understand. This is unbelievable. How does someone wrap his mind around such a terrible thing? Only the grace of God kept us from falling to pieces. Of course we prayed and begged God to spare Emma from such a terrifying disease. At the same time we understood her symptoms matched exactly with the descriptions we read.

The neurologist called in July to let us know the genetic testing was complete and confirmed that Emma had Infantile NCL, the most aggressive form of the disease. I thought I would die that day. All I could do was bury my head in my hands and cry. Even though I knew prior to his call what the doctor had just relayed to us was a very good possibility, I hoped and prayed he would call and say the tests were negative and Emma had something we could fix. But God is so much bigger than we can even imagine, and he had the power to heal Emma. We prayed that our faith was big enough to believe He could. We also knew a different path may await our precious baby girl and prayed God would give us the strength to glorify and praise Him no matter the circumstance. Emma fought a valiant fight. She ran an excellent race. Her short little life impacted the lives of many. We are forever changed because of knowing and loving her. She crossed over to new life receiving a disease free and perfect body on February 1, 2010, one month shy of her 4th birthday.

We can’t imagine going through a storm such as this without the grace of God. Knowing that He loves us and cares about what hurts us makes such a difference. God does not wish for bad things to happen to us. Kelvin and I understand that when sin entered the world it became broken, and many bad things came with it. God is gracious enough to weave these things back into His perfect plan in the best possible way. Our complete trust is in God.

God doesn’t say we have to praise Him for the storms; He just says to praise Him in the storms. Just as the Casting Crowns song states,


I'll praise you in this storm and I will lift my hands for You are who You are no matter where I am and every tear I've cried You hold in your hand You never left my side and though my heart is torn I will praise You in this storm.


Through every step of this journey we had the strength and support of our friends, family and our extended church family. They prayed when we didn’t have the words. They loved us deeper than we could have ever imagined. They fed us dinner, cleaned our home, and mowed our yard. Anonymous friends allowed Emma to meet Cinderella at her castle. We have seen the hands and feet of God. Please continue to lift us up to the throne of grace as we struggle in this life without Emma, finding our new normal.

You can read more about Emma here.



38 comments:

  1. I will be praying for your sweet girl.

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  2. This blog has touched my life. What a beautiful family. God Bless You! I love y'all.
    Love your sister-Cindy

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  3. I do not have the words.. just know you all are in my prayers and my heart each day.
    Love, Courtney

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  4. Thank you so much for including me in your blog. You know when we were down in Baytown over the summer, I told Grant something was visibly different about you and Kelvin. More than just the fact that you had matured, but you just didn't seem like the same bubbly person. Kelvin seemed more serious than usual, I saw something in your eyes, both of you. NOW I know that you were hurting for Emma and your family. We are committed to praying for her and for your sweet family each and every night.I keep a little girl Emma's age so I have a constant reminder of her in my home now. My heart aches for what you have been going through. As I read your blog, I realize you have really grown up into such a fine young woman with maturity beyond her years and insight beyond understanding. It can only come from our Savior, I know.
    We love you, Jill Byrd

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  5. Thank you for keeping us informed on precious Emma. We pray for her and all of you every day. Paige says a special prayer for "Emma Dunnam" every night. We love you all so very much and please let me know if there is anything that you ever need. We will continue to pray.........The Pipes

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  6. She is a darling little girl.
    I'm so sorry.
    Your courage is an inspiration.
    And your little girl ... what an angel.
    Thank you for sharing her.
    Alison
    The Bernard Bunch
    France

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  7. Christy, I found your BLOG by accident. I did not realize that your youngest is sick. Your BLOG is amazing, as are you, and your entire family. Your words of faith and wisdom do not surprise me...you have always had a strong faith and trusted the Lord. Emma is in my daily thoughts and prayers.
    ~Lynda Trenary

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  8. Christy, My heart broke when I found about you precious Emma. I am so thankful that I got to know you while I was in Baytown. I know that God will give you all of the strength that you need, but, I also know that sometimes our faith gets weak and we don't understand why things happen. Please know that I love you and your family. Love Barbara

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  9. Christy, Tisma told me about your daughter and how you started this blog. I don't have words for what you are going through, but we will be praying for healing. I believe God loves when we ask Him to be amazing. And He is AMAZING. I know He desires to gather us to His arms. I'll be watching your blog for news! Love you,
    Amanda

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  10. Christy,
    What a beautiful little girl! She looks so much like you. I cannot imagine what it is like to walk in your shoes, but you are such a testamony of God's love and grace and peace. You have taken a painfully difficult situation and are using it for God's glory. Your faith and courage blesses me. We are praying for each of you. May God continue to strenghten and encourage you and bless you with His peace.

    Much love,
    Susan

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  11. My son Samuel is in Carleigh's class...he came home today with the fundraiser brochure and was so touched by Emma's story...I myself can't put into words how much your family's story has touched my heart! I do know that the GOD that we serve is BIGGER that batten's disease!! Just like you said..you have to "Praise HIM in the storm"...HE gives us the STRENGTH that we need to sustain us!! We go to Maranatha Church...I am going to put Emma and your Family on our Prayer List! God Bless ALL of you!

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  12. My granddaughter brought home the flyer about the fund raiser for Emma. This is the first I had heard about your precious little girl. I also was so touched by your precious little daughter's story that I searched the internet and found your site. You and you family will be in my prayers. I go to Northside Baptist Church and I am going to put Emma and your family on our prayer list as well. God Bless you all.

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  13. I lost touch with people in BDSRA outside of the board, it's been quite a few years since NCL got together in Houston (that I am aware of), I just found out from the lighthouse or illuminator that you had a fundraiser, little late. Much less the fundraiser, but the fact that you exist. At any rate, if you ever need anything drop me an email. I'm in houston. LINCLDAD, Paul

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  14. Kelvin and Christy...... WOW.... I have sat here and squalled my eyes out reading your blog.... I read Emma's story to my younger 3 children, and let them know just how blessed they are!!! We will def. put your family on our daily prayer list, and at church. We also have some friends who have a grandson with Neuroblastoma.... here is his blog.... toughblondekid@blogspot.com

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  15. I am so sorry to hear the news about Emma. I can tell that your faith in God is strong and there is nothing that God cannot accomplish! My prayers are with you and your family and let me know if there is anything I can do for you....David

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  16. I was sent to your blog by the mother of my grandson. It has moved me to tears and inspired me beyond words. As a mother and now a grandmother I cannot even imagine the anguish you all have endured and still face. Your faith is a testament to God's grace! Thank you for sharing it with all of us. You precious little angel from God knows His love better than you and I for I know He makes sure of that! You will all be in my prayers every day. God Bless you and may the grace of our Lord Jesus Christ in union with the Father and in fellowship with the Holy Spirit strengthen you and keep you safe throughout your journey.

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  17. If not for facebook, and friends of friends praying for your family, I never would have known this story. I have a 3 and 7 year old and have never hugged them as deeply as I did today. God is truly working through your family. I dont know you, but I love you, and I am praying for him to heal your hearts.
    Your sister-Shelly

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  18. I am with shelly, if not for facebook, I would not have known about precious emma. I have a three year old and three month old and I cannot even begin to imagine what your family is going through. But what I do know is In my 23 years of attending church I have never heard someone better explain Gods will being done in the way you did-the sin entering the world part and God doing his best with it, etc...I was absolutely in awe. You and your family are an absolute gift from God to make other mothers like myself cherish every moment we get with our sweet babies...and I cannot thank you enough for sharing your story and faith with all of us. My family will be praying for little emma and for your familys strength during this time. You may not realize it, but you are an absolute inspiration.

    God bless,
    Amy

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  19. sad yet inspiring...
    praying for Emma..
    be strong always.. keep the FAITH

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  20. Love from PA.

    Father, I come before Your thrown of grace this morning to lift up little Emma and her family! Lord, we believe for complete restoration to this little body in Jesus name. We thank You for all You are doing for this little girl because we know that You love her beyond what even her earthly parents can. We call her healing from the heavenlies to manifest in her body this very morning. Father, touch the doctors and give them the wisdom needed and also Lord continue to bring a peace that surpasses all understanding to Emma's parents. I speak positive words of healing to this little girl. Emma, in Jesus name you ARE already healed. I stand against any negative words spoken over Emma and take them all to the cross. All glory goes to You Lord and we thank You in Jesus name, Amen

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  21. Your story has touched me so much. I am friends with Ashley Parker, who keeps me up to date. I have a prayer chain going for your family. God Bless You!!!

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  22. Christy sweet Christy, your strength is amazing. Today's blog especially tugs on my heart strings. Precious Angel Emma and all of you are in my constant thoughts and prayers.....Love you so much!

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  23. As a mother my heart breaks as I begin to understand what your family & Emma are going through. As a christian.....I hope and pray for God's will.

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  24. I will be praying for you Emma, and for your family. God Bless You.

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  25. I pray for God's will, I pray for your strength. Jesus be with you.

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  26. I cannot even imagine what you are going through but I know that God has given you the strength to indure it. Emma's story has reached so many and the result is that many many lives were changed by just one. Even though many in this prayer chain never met Emma their lives will be changed because of her. That must make you feel so proud. We will continue to pray for your family. God bless and we love you. - Holly

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  27. "I am especially fond of you"...what a quote!

    Please know that you, your family and your precious angel Emma are in my prayers! Your faith in God is living proof that He is with us each and every day! Please do not hesitate to reach out to us if there is anything we could do!

    Love, Kari

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  28. I, too, have been watching the progression of prayer warriors on facebook. So many of my Baytown friends have kept me up to date as the days went by. Prayers from my family of 7 went up daily for healing, wisdom, and peace. May your little angel spread her wings and fly.. and may God's loving hand be over your family as the healing process begins. You seem to have a LARGE group of followers, friend or stranger, that love and care for your family. Please don't hesitate to lean on any of us for your earthly strength. God bless you for your faith and dedication His word.

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  29. Kathy Watson -Sister Cindy's friendFebruary 3, 2010 at 3:46 PM

    To be such a little girl her spirit and story has made such a big impact. My daughter, Makenzie is Julia's, Emma Cousin, best friend and I feel after reading this and seeing what this family has gone thru I am a stronger Christian. Your faith has been amazing and I pray for you to have strength at this time.

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  30. Please know that you, and your family are in my prayers! "I am especially fond of you" Says it all. God bless you and your family

    Debi

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  31. I am so sorry for your loss. I just don't understand why so many of our babies aren't born perfect in this world, but we have to believe God has a bigger plan that none of us could possibly understand, just trust Him, like you said. Your daughter is beautiful and I am so thankful *huge understatement* that we have a Heaven to look forward to with our angels waiting for us.

    xx

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  32. I just wanted to offer my sympathies and prayers on the loss of your daughter. I din't realized until just today she had passed. You don't know me, but I read your words often on my friends, the Betzs', blog. I know what they are going through and imagine your journey with Batten's was similar. From across the country, I am thinking of you and yours.

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  33. Hi I am the sister of Jamie Lamson. I read your story and It has made me have a different thought on life. 15 min ago I never took in on how blessed I am to have my baby. I get so frustrated some times when he cries, I didnt want to spoil him, but now after reading this, i just want to hold him and never let him go. You are very strong. I dont know how i could live without my son. Your family is in my prayers for life.

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  34. Hi, My daughter has passed over to a new life as well, I want to say that Emmas story brought tears to my eyes and touched my heart, she was a very beautiful girl as my daughter was also.

    My prayers are with you.

    God Be with Us and God Bless You

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  35. I have sat here crying at your story with Emma.
    I have learned and am still learning in my own story to trust him no matter what and to say, "Glory be to God forever and ever....amen"

    Prayers for your precious family as you continue to trust God.

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  36. Although my son has a different gene mutation (CLN2) his symptoms seem to progress as quickly as your Emma's. Without faith, I'm not sure how one goes through such tragedy. Thank you for sharing her story with us. I share my son's story on my blog at BreeLoverly.com Blessings to you!

    Bree

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    1. I completely agree, Bree. I don't know how anyone goes through tragedy or triumph without God. I'm sorry to hear about your son. Thank you for sharing your blog. Blessings to you too. Warmly, Christy

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