Zeke’s Diagnosis + Hope

Zekeydiagnosis

When I said that in order for God to get full credit in Zeke’s healing by making every other option on this earth to be possible fail, He heard me.

I took Zekey to his second IVIG treatment at Cincinnati Children’s (LOVE IT THERE, P.S.) on Tuesday on my own as Andy had to work. I knew that if this treatment was going to work, we would have to start going alone. It’s once a month and a 20+ hour treatment and the other three need to go to Toledo. While in the hospital, no one, including Zeke, gets much sleep and that makes everything worse. So, it’s all just a lot but of course worth it if it was going to work for our sweet Zekey boy.

Before we set up, I was smiling as the nurses were coming in, talking to Zeke and I, getting all prepped for our soon to be miracle, right?

In comes Zeke’s amazing neurologist, Dr. Franz. I was so glad to see him! I knew he wanted to meet with us since Zeke’s case is quite severe, many treatments have failed so he watches closely with these patients until something works.

Well, he was a little gloomy-forcing a smile. I can sense these kinds of things. We had small talk and he did his usual high five to Zekey. He was very concerened how I was doing. Then the small talk ended and he paused. I realized, he had something very important to say and it wasn’t going to be good.

“Well, I’m very sorry to say… Well, I was really hoping your husband was going to be here, too. Your son has a very rare genetic disorder and it’s not good. He has a form of Batten’s disease…”

I was holding onto every word he said although I was numb. I wasn’t surprised, not at all. Something, was clearly wrong-we knew this.

He went on to tell me that it is unfortunately the worse of the two options that could be causing his seizures. The fact that all of my and his efforts were failing time and time again made him wonder if one of the tests he sent out for, being a genetic disorder, were going to come back positive. And they did.

“The reason why his seizures are not able to be controlled is because his brain is letting off a toxic chemical and it’s causing malformation in his brain which is causing the seizures. He will eventually loose his eye sight, his ability to eat, control his saliva, breath. I’m afraid he is only going to get worse. His seizures will eventually get so bad, they’ll stop. He will become brain dead and that’s when I let the families decide on what to do from there. I don’t judge their decisions.”

I replied dumb-founded (because this was the worst of the worst…he admitted to that) “Okay…so, um, how long does this progression take?”

Dr. Franz, “Well, you know, only The Lord knows that.”

BINGO! I am talking with a brother in Christ, thank you JESUS for bringing me to a place where not only are they taking such good care of us, you sent me to a Dr. who puts his faith in You, so he knows the hope we have!!! I was so thankful for this. I needed that so, so much!

He continued, “It takes approximately 3-5 years before he gets to the final stage. I’m sorry to say it’s extremely progressive. There isn’t a cure.”

At this point, I start to cry because, how do you not?! Then I start to sob, because how do you not?! Dr. Franz takes Zeke from me so I can just get.it.out.I then say, “This is the kind of thing that makes heaven so beautiful. Zeke will not be this way in heaven. We are strong beleviers and we will be praying for healing, here on earth, though.”

He replied, “Well yes! Don’t stop praying for that!”

He was kind, and compassionate. Before he left, he took my hand and looked deep in my eyes and told me he was so very sorry. I was looking at, not a stranger, but a brother and that was such a blessing in the midst of devastating news.

The nurses were all notified and checked on me often, like a friend would.  They would give me hugs and say, “God bless you ” when their shift was over.

I then had to call Andy. And that was so difficult. I wanted to tell him good news but there wasn’t anything other than the blessing of Dr. Franz and I talking of heaven and of God. And that’s good news, right?! I mean, that’s straight up ‘THE GOOD NEWS’!

zekediagnosis2

I had a little time to process it all but honestly, every time I began to sob, Zeke needed me or a nurse walked in.  Andy had to work late at night but then I came to a place where I needed him. Not just emotionally, but physically. Being at the hospital is not easy, especially with Zeke. I can’t even begin to describe the difficulty. God love him! 😉

So, we left. Andy headed into work and I went straight to Toledo. I had already called my parents. My siblings. I didn’t have any time to really grieve, yet. I am literally 110% needed by Zeke and have 3 other sweeties on top of that. To get a second to breathe and take it all in, even talk to God was difficult.

I go Crazy at hour 15, people. ‘Why even put on make-up?’, I ask myself.

zekediagnosis3

The ride to Toledo was full of worship music because Zeke does best with music on. But I can’t help but sing to it which means I was only able to pray what I was singing. I knew God was with me.

In my doubt, I asked Andy, “What do we pray for? This diagnosis is huge.”

Andy replied, “We pray for God to heal him. That doesn’t change. It never will. The diagnosis doesn’t change anything.”

That blessed me so much. I needed reminded of that. This diagnosis is minute compared to our God. He is fully capable of healing our sweet boy. His sweet boy.

So, we continue to pray for God’s healing. To be the persistent widow. To pray The Lord’s Prayer over him. Why on earth (ha!) would we stop praying that?!

We also thank God for what He’s doing because ‘doing’ is definitely going on. I mean, is your heart being stirred in a way it hasn’t before? Do you feel the Holy Spirit bringing you to a new place in your relationship with God? He’s doing things in the hearts of so many through Zeke’s illness. And believe it or not, that blesses us. It keeps us going! Why go through this for nothing?! This isn’t just about Zeke. It’s about through his story, God is being revealed. He is living up to his name.

So, until Zeke is fully restored, as we ask you pray with us, we will pray for strength and mercy and wisdom for those who are working hard on finding a cure. Pray with us?!  THANK YOU!

*What is Batten’s Disease?!*

Basically, it’s rare. Two people have to be carriers in order to have a 25% chance of passing on both recessive genes (Andy and mine) on to one child. All of my children had the same chance of getting this disease. They all have a 50% chance of becoming carriers and a 25% chance of not carrying it at all.

Batten Disease has 4 different “time zones”, if you will.
1. They can be diagnosed from conception and never really develop well, right from the start.
2. They can develop it at age 2 and up until then, develop fine, as Zeke did.  It starts with seizures, then they loose their eye-sight as that chemical gets into the nerves of the eyes. Next, they slowly loose all of their functionality. Usually, after about 3-5 years after diagnosis, they become brain-dead and are unaware of life itself. Rarely do they make it to early teens. This is when he gives the family the choice on how long before letting go of what is now only a body. *Choking down sobs* what a horrific disease that one too many have dealt with! ‘May Your kingdom come, Lord Jesus!’
3. They develop in later adolescents (age 7-10)
4. They develop the disease after age 30.

The refreshing thing is, when you carry the gene, as Andy and I both do, we are not effected and you only carry ONE of the 4 option. Andy and I carry the Later Infantile gene (#2), which means our other children are okay. Bexley isn’t showing signs as Zeke was at her age, so he says there is no concern there.

So, what do we do with our other kids? Well, since we know the exact gene mutation (that many Ohioans have as whoever came to settle here, brought this gene and it takes two to have the possibility of the disease and even then, it’s a 25% chance.CRAZY!) they know where to test the other kids. They will see if they are carriers. If they are, they just need to be sure their future spouce isn’t a carrier, then the children will not ever get the disease. And if they want to be 100% sure, they can get a non-carrying egg or sperm and do invetro. Wipe out this darn disease for good!

Clear as mud?!  It’s fascinating, to me. Obviously terrible and so a part of The Fall.

As always, thankful for the power of The Cross and what that means for those who walk with Jesus.

73 Comments

  • Reply August 2, 2013

    Lindsey Simmons

    Oooh Breena…..I am in total tears of sorrow and amazement. You are right….for God to send you a doctor that has faith in your God….that had to speak to you. You are truly…exactly correct….Zeke and your family….are changing and will continue to change the lives of others and shake them and guide them toward Christ and his beautiful love. I’m praying for you all….I think of you often.

    • Reply August 23, 2013

      Bree

      Thanks SO, SO much, Lindsey! You have seen the power God has on healing through your beautiful story of redemption in your married life. That same God can heal our Zeke! Love to you and thank you for praying! So blessed by that!

  • Reply August 2, 2013

    Anonymous

    I dont even know you, Breena, but I have been following your family’s story intently–praying all the while. I stand in awe of you and Andy and how you have continued to embrace the cross and the promise that He will never abandon you. To think of all the people who are following Zeke’s struggles and who in turn are learning to dialogue with our Father, to be angry with Him, to collapse at His feet, and to rejoice in the presence of His Spirit, and on & on; because you and Andy shown genuine RELATIONSHIP with our Savior. God DO bless them in your son Jesus Christ’s NAME.
    Toni Lee

    • Reply August 23, 2013

      Bree

      It’s crazy, isn’t it? God can take something so awful and bring good out of it…hearts turning to Him, saved believing in healing more than ever. So humbled and thankful for the awesomeness of our God! Thank you for encouraging me and for your prayers! Blessed by them!

  • Reply August 2, 2013

    Ashley Wifey

    Bree, I cannot in my wildest dreams begin to fathom the idea that I would ever be able to be as strong, as eloquent, and as clear about my full faith in The Lord as you are here. My husband and I stopped immediately to pray for Zeke’s healing, your marriage, and strength for your other children. If there is anything we can do, know there are people out here.

    • Reply August 23, 2013

      Bree

      I am so, so thankful that you saw urgency in praying for Zeke, our marriage and our children. Spot on. Thank you for your encouraging words and I so look forward to meeting you soon!

  • Reply August 2, 2013

    Joyce McHam

    Praying with and for you sweet girl.

    • Reply August 23, 2013

      Bree

      Thank you, Joyce!!! Blessed by your sweet words :)

  • Reply August 2, 2013

    Liz

    Hi Breena,

    Don’t know if you remember me, I’m Charlie’s mom. I just wanted to tell you I am praying for you guys. I admire your strength and faith. Honestly, I don’t know that I would be as amazing as you are as you go thru this horrible time in your life. I remember when you were pregnant with Zeke, such a precious time. God totally is in control and I pray the he will heal you precious son.
    God bless you all!
    Liz Vidourek

    • Reply August 23, 2013

      Bree

      I SO remember you! Thank you for your sweet words and for your prayers! God is really big and I’m thankful I can trust in that. :)

  • Reply August 2, 2013

    Anonymous

    Bree :(

    This is Heather Zalenski (Megan Dowell’s friend) and I contacted you for the first time a couple weeks ago. We are praying along with many others for you all. Also, my Aunt Debbie works and Cincy Childrens….but for a kidney doctor however she know’s Dr. Franz as well. I called her as she is a believer in miracles. She is now also praying for you all.
    We are all gathered in one voice to God for you all!!!
    In Christ,
    Heather Zalenski

    • Reply August 23, 2013

      Bree

      I love all of this so so much! I’m sorry I haven’t replied…it’s crazy around here but that doesn’t mean that I am not blessed by your contacting me, because I am! Please continue to pray for his healing! Amen to all of this! :)

  • Reply August 2, 2013

    Chris Kusner

    Your faith is an inspiration! Know that Jeff and I keep you and the family in our prayers, and know, that in some way God will be glorified through Zeke. All things are indeed possible through Christ who strengthens. — Chris & Jeff

    • Reply August 23, 2013

      Bree

      Amen! God is getting glory, for sure :) Excited to see Him do big things! Blessed by your friendship, even though we haven’t gotten to know you all well, just know you have blessed us with your encouraging words and believing with us!

      • Reply October 14, 2016

        Caro

        I wouldn't really see what they could gain from forcing them into a mahrrage…Wiy would some dude who is basically raping some guy want to make him into his wife? A power thing perhaps…?

  • Reply August 2, 2013

    Amy

    Praying for complete healing for Zeke. While researching more on Batten Disease, I’ve come across many stories where this disease has affected more than one sibling in a family. I believe it’s a miracle that your 3 other children are not affected. God has already done amazing things through Zeke & will continue to do so. My faith has definitely been strengthened through his story!

    • Reply August 24, 2013

      Bree

      Thank you for standing with us in prayer for Zeke’s healing. God is so big, so good, even through all of this. Excited to see what He is going to do!

  • Reply August 2, 2013

    Anonymous

    Praying for your little Zeke. Someone from Heritage shared this on facebook. We are Heritage members and remember Andy when you all came to Heritage. May God bless all of you!
    The Leis family

    • Reply August 24, 2013

      Bree

      Oh, Heritage! Yay! Thanks for your prayers. So blessed by them! :)

  • Reply August 2, 2013

    Lance Tweedie

    Hi Breena,
    I followed a friend’s (Rene Horsman) facebook link to your site. I was so encouraged by your faith and feel led to partner with you in praying for healing. I pastor a church in Ontario and will be speaking on healing on Sunday. I will be sure to include Zeke in our congregation’s prayers as well.

    Praying.
    Lance

    • Reply August 24, 2013

      Bree

      I’m so thankful for your praying with us on behalf of our son’s healing. God’s so big, and we believe He is going to bring our boy full healing! Yay! Thank you!!!

  • Reply August 2, 2013

    Lynn

    Dear Breena,
    I always knew you were special. However, you and Andy and your faith have renewed something in all of us. My heart breaks for you and your family but at the same time you are such an inspiration that words do not convey what I am feeling. God bless you and your family and especially Zeke…..you all are in my prayers daily.
    Love you, Lynn

    • Reply August 24, 2013

      Bree

      OH, Lynn. You get me right in the heart every time. I love you and so thankful God gave you to me as a spiritual leader and mentor. I am so blessed because of our times together. Thank you for always encouraging me and letting me be just where I was at and not expecting perfection. It has helped make me who I am today. Love you!

  • Reply August 3, 2013

    Anonymous

    I somehow saw this post on FB and went on to read your blog. May you be encouraged even if from a complete stranger and sister in Christ. My heart aches for you and the journey you may face but I am praising God at your ability to somehow praise him and bring him glory right now. This world is so troubled and difficult to cope with at times. Thank you for being an inspiration and may God protect your hearts whatever may come. I’m praying right now for God’s healing hand. He can do it if that is what he chooses. Either way – may he meet you where you are at each step of the way.

    April

    • Reply August 24, 2013

      Bree

      April, thank you for your encouraging words! If you read past posts, you’ll see God has stretched us not to worry or wonder (or even care) IF God will heal him, but to pray and believe. To be the persistent widow and not stop waiting and pleading for Zeke’s healing. It’s what we are called to do and God is fully capable of doing it. The rest is not our burden to cary. Bless you!

  • Reply August 3, 2013

    J Bidd

    I am humbled by your faith and pray daily for your family.
    ♥Christen

    • Reply August 24, 2013

      Bree

      You’re so sweet :) Thank you!

  • Reply August 3, 2013

    Anonymous

    Breena, we have spread the word for prayer. We are praying. Your faith is amazing. Dale and Felicia in Roanoke, VA

    • Reply August 24, 2013

      Bree

      Awe, thank you!!! So blessed by your praying and believing with us!

  • Reply August 3, 2013

    Melanie Boulis

    Bree, I live in Bryan and have made many trips to Cinci Children’s Hospital with my daughter (who now resides in heaven) for cancer treatments. I am praying for you and would be your trip buddy if you want one. If you have any other needs, don’t be shy in asking. God uses the body of Christ to meet needs many times. It is humbling, but a blessing as well to have others bless you. I pray that God would wrap you all up in peace and hold you tight in His amazing strong arms of love. (I heard about your son on Facebook.)

    • Reply August 24, 2013

      Bree

      You’re the sweetest for your willingness to be my car buddy! I am so sorry that you lost your daughter but always encouraged of the hope of heaven. How happy, peaceful and whole she is and you’ll see her again someday! My momma always says, if those who reside in heaven could have pity on us, they would! Amen!

  • Reply August 3, 2013

    Lita Nanulaitta

    Let your unfailing love surround us, Lord,
    for our hope is in you alone.
    Psalm 33:22

    Nothing is impposible with God.

    • Reply August 24, 2013

      Bree

      A-MEN! Thank you for encouraging me with this truth :)

  • Reply August 3, 2013

    Anonymous

    Breena – I saw Alison post this on Facebook and my heart breaks so much for you and your family. We met years ago – at New Years Eve 2004 in Times Square! :) I will really be praying for complete healing and a miracle from Jesus for Zeke, and peace for you and your family during this next season. A friend shared this verse with me recently from the Message and I wanted to share with you all as a prayer! I’m believing and praying with you.

    “But God’s not finished, He’s waiting around to be gracious to you. He’s gathering strength to show mercy to you. God takes the time to do everything right – everything. Those who wait around for him are the lucky ones”

    Bren

    • Reply August 3, 2013

      Anonymous

      P.S. That verse is from Isaiah 30:18

    • Reply August 24, 2013

      Bree

      Oh, beautiful Bren. I SO remember you! You were always a riot to be around! Thank you SO much for your standing with us in praying and believing for Zeke’s healing. So, so blessed by this! Love that verse! Blessings to you, sister-friend!

  • Reply August 3, 2013

    Lita Nanulaitta

    This song blessed me. I pray will bless you too.

    Glorious Ruins – Hillsong live

    Let ruins come to life, in the beauty of Your name, Rising up from the ashes, God forever You reign, and my soul will find refuge, in the shadow of Your wings,I will love You forever and forever I’ll sing

    When the world caves in still my hope cling to Your promise
    when my courage ends, let my heart find strength in Your presence
    I will walk through the fire with my head lifted high and my spirit revived in Your story
    and I’ll look to the cross as my failure is lost in the light of of Your glorious grace

    http://youtu.be/qgMV3_Md8MU

    • Reply August 24, 2013

      Bree

      <3 Thank you!! Love!

  • Reply August 3, 2013

    Rick Mohrbach

    You probably don’t know me, but I attend the same church as Todd and Becky and have been lifting up Zeke in prayer for several months now. I cannot begin to imagine what you are going through, but I have not been able to get what you have written on here out of my mind since reading it yesterday. It is heart breaking yet such an encouragement to read your words of hope and faith during such a deep trial as this. As a parent and fellow servant of Christ I can only hope that I would respond in such a way as you have if, God forbid, I am ever faced with such a situation. Thank you so so much for sharing and revealing such intimate emotions and words. The Lord truly is using Zeke to teach us all about Himself, and be assured I will continue to come before His glorious throne of grace on Zeke’s behalf. Sincerely in Christ, Rick Mohrbach

    • Reply August 24, 2013

      Bree

      I have heard of you, for sure! Especially for your commenting on here and how you have started the fasting movement in the Assembly. God’s using you and to know you were stretched in faith reading this really blesses me and it’s quite humbling knowing just a minute part of how God is using this to grow the faith of many…He is for sure growing my faith! Thank you so, so much for this and of course, for your praying for Zeke! Blessings!

  • Reply August 4, 2013

    Anonymous

    Breena- we are praying for your sweet family and especially little Zeke. If you ever need to drop the 3 other kids off on the way to cincy, feel free- we live not far off 75 in Dayton and would be happy to help in any way we can. God bless you!
    Sarah (McVicker) Chavez

    • Reply August 24, 2013

      Bree

      Thank you! So blessed by your comments and your willingness to serve my family!!! Thank you!!!

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        Gertie

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  • Reply August 4, 2013

    Amanda

    OH Bree, I can’t even imagine what this must be like for you and your family. I’m praying for you tonight.

    • Reply August 24, 2013

      Bree

      Thank you for your prayers!!

  • Reply August 4, 2013

    BILLY

    PRAYING 4 YOU

    • Reply August 24, 2013

      Bree

      Thank you!!! Blessed by that!

  • Reply August 4, 2013

    Gary

    Praying for all of you. Zeke and you have touched and influenced many lives. This disease has given you an opportunity to share your faith and receive God’s blessings. I pray for wisdom for the Doctors, peace for all of you and that your marriage will stay strong!

    • Reply August 24, 2013

      Bree

      Thanks, Gary!!! Very humbled to know God’s doing big things through this and so excited to see God’s healing hand pour out! Praying and believing!

  • Reply August 5, 2013

    Anonymous

    God be with you along this journey. Your son is blessed to have you as his mother. I admire your courage, your faith, and your fortitude. Wow.

    • Reply August 24, 2013

      Bree

      Oh, God is with us, for sure! I couldn’t lift a finger through this without him! :) Thank you!

  • Reply August 5, 2013

    Anonymous

    Bree, I don’t know you or your family… Only through a crafters group on Facebook. Oh honey, I am so very sorry for you and your family. I cannot begin to imagine how you must feel. I admire your trust in God! I will keep all of you in my prayers. May God have mercy on your little boy and give you and your husband the strength to deal with all of this. I do believe in miracles and I will pray for one for Zach. God Bless!!

    • Reply August 24, 2013

      Bree

      Thanks for standing with us in praying for Zeke’s healing! Blessings to you!

  • Reply August 6, 2013

    Marla Taviano

    Love and hugs to all of you. My heart breaks for you and Andy. Praying for complete healing in Jesus’ name! xoxoxo

    • Reply August 24, 2013

      Bree

      Thank you so much, Marla! Feeling the strength of God through The Body and so humbled and blessed by it!!

  • Reply August 6, 2013

    Anonymous

    Lord Jesus, Heal Zeke and restore him to good health. In Your name we pray, amen. “They triumphed over him by the blood of the Lamb and by the word of their testimony.”

  • Reply August 7, 2013

    Chris Hoover

    Hello Bree, I received your blog from a friend. My son also has Batten Disease. We live in Delaware, Ohio. My son, Nathan, is 18 and has Late Infantile-Variant (CLN6). We started this Batten journey in 2001 when my son was 6 years old. My heart goes out to you, your husband and your family, but especially Zeke. Though this disease is unyielding, our faith in God has not been, and without it we would have never stayed so positive as we have. If you ever have any questions, please feel free to contact me. We will add your little man, Zeke, to our prayers. Chris Hoover (hoovdawg3@aol.com)

    • Reply August 24, 2013

      Bree

      Chris, once I could kind of sort of wrap my mind around this, I thought, “All the other families who have gone through this! Oh my gosh! Come, Lord Jesus!” Thank you for your praying with us and for sharing your story. Love to you!

  • Reply August 14, 2013

    Anonymous

    I seen your blog through fb and plan on sharing it to get the fb prayer chain going for Zeke and your family. Your strong faith will heal all of you and get you through this journey. I will keep Zeke, your family and the medical professions overseeing Zeke in my prayers and that God lays his healing hands on all, in Jesus name. Amen

    • Reply August 24, 2013

      Bree

      Amen and thank you so much! Blessed by this!

  • Reply September 5, 2013

    Alisha Irwin

    Bree, you are so amazing. I’m am so humbled by your faith and truly at a loss for words. Your love and trust in our father in a time like this is incredible and beautiful. You will probably never know the impact of your story. Your faith has brought me to my knees, thank you for sharing even in the most heart wrenching of times. We love you guys and are praying and believing in divine healing for Zeke and also for the rest of your family.

  • Reply October 4, 2013

    Bree

    Thank you for your words of encouragement, Alisha! God is doing big things and we can’t even imagine all of them. He is good and constant where everything else is falling apart. So thankful for His strength in my weakness. Love you! Thank you for praying with us!!!

  • Reply October 5, 2013

    Leesa

    I’ve never heard of the disease. My heart is completely broken for you, Andy and your entire family. You are such an inspiration! It’s so evident that the Holy Spirit is carrying you through this and giving you the strength to press on. That in and of itself is a HUGE testimony to many others following your blog.

    Jesus, I pray for Zeke right now. God, You created him and have a plan and a purpose for him. Jesus, YOU are the Healer and NOTHING is too difficult for You. I speak total and complete healing and restoration to Zeke’s body right now, in the name of Jesus! I command the genes and every fiber of his being to come into alignment with the Word of God. I speak wholeness to his body, in the name of Jesus! Seizures, GO in Jesus’ name! I speak against Batten’s Disease and command it to leave his body, in the name of Jesus. The disease MUST bow to the name of Jesus! I speak divine peace over Zeke, Bree and Andy right now. I speak supernatural strength to Bree and Andy. Lord, I’ve been asking You for medically documented miracles for the people that You send across my path to pray for. That’s my request to You for Zeke…..let Zeke be a medically documented miracle and amaze the doctors, surgeons and everyone assigned to his case. Let the testimony go viral, to Your glory! Thank you for this amazing family. I speak blessings in abundance over them, in Jesus’ name! Overwhelm them with Your presence…..it is in Your name that I pray this prayer. Amen!!!

    Blessings to you, Bree!
    Leesa Reed

  • Reply February 10, 2014

    Compassion | Bree Loverly

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