Let me tell you a bit about Enzo's history

  Enzo is almost 9 and was born on May 24, 2005, a very healthy baby.  At 6 months, he developed a fever.  A horrible fever...he went from fine and smiling to shaking with 104 temp within a couple of minutes.  I can't even describe what happened...it was so bizarre.  For weeks after he had shaking episodes.  Doctors had no clue what was going on...I had no clue how to help him.  I just held him in my arms trying to think of what i could do to cease the shaking.  I would hold him tightly, I gave him warm baths, I would try to redirect his attention.  Nothing worked, he would have to ride through a scary storm of shaking, while fully coherent.  This happened numerous times a day for different intervals.  Were they febrile seizures?  What the heck were they?  It was horrible.  Within a couple of weeks, we noticed his eyes dancing.  Like something you would see in the circus.  They sent us in for an MRI and found two symmetrical  lesions in the pons area of his brain.  This was a clue to the docs that he had "Leigh's Syndrome" a Mitochondrial disease with a life expectancy of two years.  What?!??!  My healthy baby was no longer healthy and was not going to live?!?!?!  This was by far the worst day of my life.  We went home and many people came over to help us with this news.  I think we all stared at the walls....dumbfounded!  I couldn't stop crying.  It felt like the funeral process had begun....we began grieving.

I read today that Dr. Koenig said that Leigh's disease is the hardest diagnosis to deliver.  It is always fatal.  (how our doc told us is another story!)


This is the clinical definition of Leigh's Disease:


Leigh's disease is a rare inherited neurometabolic disorder characterized by degeneration of the central nervous system. 

Symptoms of Leigh's disease, a rapidly progressive disorder, usually begin between the ages of 3 months and 2 years. In most children, the first noticeable signs may be poor sucking ability, loss of head control, and loss of previously acquired motor skills. These symptoms may be accompanied by loss of appetite, vomiting, irritability, continuous crying, and/or seizures. 

As the disorder progresses, symptoms may also include generalized weakness, lack of muscle tone, and episodes of lactic acidosis. Lactic acidosis, the accumulation of lactic acid in the brain, may lead to impairment of respiratory and kidney function. Heart problems may also occur. In rare cases, Leigh's disease may begin during late adolescence or early adulthood. In these cases, the progression of the disease is slower than the classical form. 

The most common treatment for Leigh's disease is the administration of thiamine or Vitamin B1. In patients who have a deficiency of pyruvate dehydrogenase enzyme complex, a high-fat, low-carbohydrate diet may be recommended. Oral sodium bicarbonate or sodium citrate may also be prescribed for management of lactic acidosis. 

The prognosis for individuals with Leigh's disease is poor. Death usually occurs within a few years. Occasionally, patients may live to be 6 or 7 years of age and a few patients have survived to the mid-teenage years. Children who survive the initial bout with the disease may not fully recover and are likely to face successive bouts of devastating illness which ultimately causes death. 


Well, I think Enzo has beat the odds!!   I am ever grateful for every day that is given to us.  


Lot's of tests were given.  Genetic testing, spinal tap, loads of blood work, etc.  We never found any red flags or info.  They ran many tests to search for a maternal connection.  Never found a connection.  So, the only answer as to why he may have this disease was "spontaneous combustion".  Ok...so it was just a crab shoot and he lost?  

  At 3 years old, we finally did a muscle biopsy.  Luckily, we have a doctor in the family that is extremely compassionate towards Enzo's well being.  She searched for a lab that was leading in Mito discoveries.  So we sent our muscle biopsy to Columbia University.  We made an appointment with Dr. DeVivo and Dr. Hurano did the testing.  They did find a deficiency in his Cytochrome C Oxidase which is within the mitochondria.  This was the clue to confirm the suspicion.  They did tell us that Enzo had a much better prognosis.  A typical Leigh's patient would present much more complex, clinically.  Enzo produces sufficient lactic acid, with a deficiency here, he would function poorly. 

  At this time in his, life 6 months to 4 1/2 years, he was pretty healthy.  He walked across a room once, so he never really walked due to ataxia and muscle weakness. He was able to eat and talk (his voice was ataxic too). He was considered failure to thrive because he was under weight.  He was fully cognitive and very happy.  My next post will be about the stroke he had at 4 1/2, due to a stomach virus (another symptom of Leigh's).  

  We still don't have a concrete diagnosis.  His clinic notes read "a slowly progressive encephalopathy due to a yet unidentified etiology.   Studies raise the concern of primary Mitochondrial Disease, specifically a Leigh-like syndrome."  


So...this was the beginning of our journey.  If you are a parent that is facing a diagnosis like this, I hope I have given some insight.  I hope to help you gather the right questions to ask.  The more you read about Mito, the more confident you become.  One thing I have noticed about our Mito experience is that I have never met another family that is in shoes like ours.  If you are reading this and your shoes are similar, please contact me!!!

If I pray enough or the right way...God will heal him...hmmm.

After God showed me that HE was with me through all of this, I was sure that my mighty, powerful God was planning a healing.  Of course, he gave me that scripture...Mark 9:29...wasn't he basically telling me that He wanted to heal Enzo?!?!?!?  I fell very deep into prayer...thinking there was a method or maybe a formula to urge the hand of God to move.  My son had a two year life expectancy...God had to work fast!  I think I did everything possible...annointed him daily with oils, I prayed over him with all my might, I went to healing services, I played worship music all the time...I did not want a moment to pass and possibly miss the moment that God decided to heal him.  For a couple of years I had super mamma prayers going on.  I wore myself out.  I had such a huge belief that God would do this...there really wasn't a doublt in my mind.  I was praying for a total healing...cause I truely believed (and I still believe) it was possible. 

We had the second birthday that we were told that we wouldn't.  That was a miracle.  Our son was happy and doing well for the most part.  He wasn't typical by any means, but for a child with this disease, he was doing great!  So, we did get a miracle...just not the one we had hoped for.  The Bible tells us all of these huge miraculous events...I wanted one of those ground shaking, Jesus appearing events.  I needed one sooo bad!  I was so disapointed that Enzo did not recieve a full healing.  I stopped praying with such gusto and I was very tired.  Very tired of praying.  Yet, I knew that I needed to continue.  I was very grateful for everything God was doing.  I just started to question my role in prayer, maybe I need to pray differently.  I wasn't sure what to do...I was so confused.  I felt like Enzo's healing was riding on me.  I needed to figure out what God wanted from me.  I cleansed my life, forgave those around me, stayed focused on Him...I was living for Him.  But I had no clue how to pray.  I was told that I should pray expecting to recieve...pray for the specific need and expect it to happen...I was told to claim that prayer request.  Name it, claim it?  I always felt like I was telling God what to do.  I really had my whole heart sunken into my prayers.  After years of praying...I was exhausted.  This is so hard for special need parents.  It is heartbreaking to not get that miracle.  I'm sure most people begin to doubt God.  Where is this God of the Bible?

This spring we will celebrate Enzo's 8th birthday.  WOW!  For Leigh's Disease..this is remarkable.  I still struggle with prayer.  This is where I have come....I believe we are to live in HIS presence...at all times.  I believe now that when I pray...I need to be quiet.  I need focus on Him.  I need to be humble and recieve from Him.  I just need to thank Him and praise Him for being my God and being in control.  This is a sustaining prayer...a prayer of peace within Him.  Of course, I still shout out to God all of the things I need Him for, but He already knows these things.  Maybe I should still be praying harder...but I don't know if I have it in me.  All I can do is trust Him and keep praising and thanking Him.  I do believe that I receive the God of the Bible when I pray this way.  I have had some awesome prayer time that cleanses me.  That is an awesome miracle too. 

I also have to remember that this life and Enzo's life are His.  I can pray to change things...but, what is His will?  Maybe His will is for Enzo's life to be this way.  Maybe I have to accept His will and pray for His presence and for Him to show me what to pray for.  Maybe when I am quiet and pray the Holy Spirit is interceding for me...cause I really don't have the words.  I dunno.  All that I know is that this is quite a journey.  An unraveling journey...I pray I always have my eyes opened to what He wants to show me. 

Today in my life, I feel that all that He wants is for me to enjoy my time with my family.  To stay focused on Him and serve my family.  I need to really explore how to sustain myself through lifes challenges...in Him, in His presence....and trust Him.

It really needs to be that simple...and I need not complicate it with all my crazy desires and ways (maybe thats ADD...IDK!)  I think I'm onto a new post here. 

All that I am...I place in into your loving hands.

This is the song that has been playing in my head for weeks now.  Music is huge for me.  When I battle the natural thoughts in my head...I turn to music to change those thoughts and stay focused and humble.  Worshiping in our storm I believe is the highest form of praise.  I hope this song helps you as it did me....let me know if you love it like I do :)

Rooftops by Jesus Culture

http://www.youtube.com/watch?v=SVUy6UHVzEQ

A living sacrifice

After this wonderful God experience...He was ready to take me to the next level...

Romans 12:1
Place Your Life Before God So here’s what I want you to do, God helping you: Take your everyday, ordinary life—your sleeping, eating, going-to-work, and walking-around life—and place it before God as an offering. Embracing what God does for you is the best thing you can do for him. Don’t become so well-adjusted to your culture that you fit into it without even thinking. Instead, fix your attention on God. You’ll be changed from the inside out. Readily recognize what he wants from you, and quickly respond to it. Unlike the culture around you, always dragging you down to its level of immaturity, God brings the best out of you, develops well-formed maturity in you.

  I believe we were chosen.  Our special situation didn't happen by chance.  I do believe that God allowed this to happen.  I believe He plans to walk with us....He will never leave us.  In this world we will have trouble....I try to remind my self.  We aren't in Heaven yet...so we should expect trouble. 

  I like this scripture a lot.  I had to let my earthly desires and expectations die...I had to place my life at His feet as a living sacrifice.  Offering every moment of my day to Him.  If we search daily for what He wants of us...it really is quite simple.  It all starts with love (I believe).  If we focus on God all day....we take the focus off ourselves.  If we focus on Him..we forget about what we don't have and rather focus on what we do have.  We can become thankful.  Living with a thankful heart has changed me.... as a result, I feel His peace.  If we have His peace, we can enjoy every moment in our storm.  If we focus on Him, we can embrace this journey, we can learn and experience all that He has set before us.  I know that I could not endure this life without His presence...I received His peace, His love and His joy.  I am truly a changed person.  If I never had to endure this storm...I don't know if I would have ever become the person that God wanted me to be.  Unfortunately...I thought I was fine weathering life by myself...I had it all figured out.  Boy..was I humbled.   

I think Enzo was 2 or 3 in this pic.  He melts my heart.

My Mark 9:29 story...

If you feel like you are alone, I have a story for you!  This is the most significant story of my life.  Nothing this great has ever happened to me.  It is quite lengthy....so you might want to heat your tea kettle:)
My whole life changed when I gave birth to my second son.  Enzo Luigi.  While pregnant, I pictured this Enzo to be a motorcycle racer....I pictured a cutting edge handsome boy with wavy brown hair.  Why I pictured this I don't know....I probably wouldn't have let him be a racer!  He was born healthy and with the hairiest back that I had ever seen, so I knew he could carry the name that we had chosen for him.
  He was a very good baby, but he didn't  sleep well. He would wake almost every hour.  You know the first thing that you do when your child wakes and you don't feel rested...you look at the clock.  On many nights he would wake at 1:29 am, he would nurse back to sleep.  He would wake again, I would look at the clock and it would be 2:29.  I would nurse him back to sleep and he would wake at 3:29 and we would repeat the process again.  What was it with the 29th minute?  I felt crazy!  Morning would come and I would walk past the clock and take a glance....I always glanced at 9:29.  Evening would come and I would always see the clock at 9:29.  Now I really thought this was odd.  I went through some postpartum depression within his first 6 months and I saw these numbers for 6 months!  The number 29 did have significance in our lives.  My husband and I were married on the 29th, my father in law passed away on the 29th, my due date with my first son was on the 29th.  I couldn't figure out why this was happening.  I thought that somehow my father in law was sending me messages from heaven.  I thought he was telling me to toughen up and stop crying all the time.  That didn't help.   I started telling people that something was going to happen on or at 9:29.  This number was totally driving me crazy!  Well.....I did get my answer.

When Enzo was 6 months, he developed a fever.  A horrible fever...he went from fine and smiling to shaking with 104 temp within a couple of minutes.  I can't even describe what happened...it was so bizarre.  For weeks after he had shaking episodes.  Doctors had no clue what was going on...I had no clue how to help him.  It was horrible.  Within a couple of weeks, we noticed his eyes dancing.  Like something you would see in the circus.  They sent us in for an MRI and found two symmetrical  lesions in the pons area of his brain.  This was a clue to the docs that he had "Leigh's Syndrome" a Mitochondrial disease with a life expectancy of two years.  What?!??!  My healthy baby was no longer healthy and was not going to live?!?!?!  This was by far the worst day of my life.  We went home and many people came over to help us with this news.  I think we all stared at the walls....dumbfounded!  I (once again) couldn't stop crying.  It felt like the funeral process had begun....we began grieving.  Still seeing the clock at 9:29 all the time.  Now I was angry to see it, I started yelling at God, telling him that I did NOT understand.  After a few days of grieving and uncontrollable crying, we finally got our message....it wasn't from my father in law....but from my creator....from God.

I received an email from my husbands Uncle Ed.  He wrote that his daughter was praying for us and opened her Bible to read.  She came across a passage that was perfect for us and wanted to share it with us.  It was Mark 9 through verse 29.  There it was...our 9:29!!  I had shivers up and down my spine.  I called my husband over to the computer for him to read it.  He is such a skeptic that I thought he would think I was crazy (again).  He was amazed also.  We were so touched by God at that moment.  For days we had felt so alone, without hope, devastated.  God had been preparing me for what was to come and he didn't plan on me doing it alone.  He knew that I would need him to get through this.  He knew Enzo would need Him.  He gave us hope!!!  Mark 9:29 states that only this kind of healing can come from prayer and fasting.  Holy cow!  What a message!!!  Our attitudes immediately changed.  God was in charge and He had a plan.  Holy cow!  We began to pray.  All the time....anointing him and praying as often as I could.  If I left the house, I put on the Christian station to focus more on Him and what He wanted to do.  I didn't want to miss one beat with God!
  God really made this message clear to us.  The story gets better!  We hadn't chosen a church to raise our family in at that time.  My mom's friend invited us to go to her church because they would anoint Enzo with oil and pray over him.  So when we were cleared by the docs (we thought we were in the clear) to take him into the public....we took him to church.  What do you think the pastor preached on?  Mark 9:1-29!  Yes He did!  God wanted to make sure that I did NOT doubt this message for us.  He is so cool.  The pastor (still my pastor to this day) read every verse, explaining in great detail, all of the important information to truely understand this chapter. We were stunned.  My husband the critic was stunned...there was no denying that this message was for us. 
  I hope I was able to write this story in a way that it hits you, like the reality of it hit me.  To this day it is very real to me.  It is so easy to live life knowing God is there...but, not really knowing that He is REAL.  He wants to touch our lives personally if we will recieve it.  We need to let Him be in charge.  I love that He doesn't want us to worry.  That seems almost impossible with a mothers love...but we have to realize that our special needs child is in His hands.  We can only love them and care for them.  Their destiny is not in our hands.  Our children don't really belong to us....they are on loan and on this Earth to glorify God.  Wow.  Boy, did it take years for me to swallow all of that and believe it.  I did and my heart has peace.  I am able to enjoy every day that God is allowing me to have with Enzo.  Come to find out, Enzo does have that disease that we didn't believe he had.  We took him to Columbia University in New York when he was 3 because they weren't able to diagnose him in Detroit.  He does have Leigh's Syndrome and he is now 7 years old.  So far, 5 years more than expected.  I am going to keep praying and fasting and asking for more.  I know that He is there you are not alone.

If a kiss could heal....my youngest son would not be living with a Mitchondrial Disease.  When I kiss him (which is a million times a day) I actually feel like that kiss could do the trick.  That's what is so powerful about an unimaginable love.  I thank God for this opportunity to love like this on this earth.  I just wish that my child would outgrow me.  I wish my kiss would heal him.  The pain in wishing for these things can tear you apart.  Luckily...because of Enzo...I have a relationship with Christ.  I have hope, I have peace....I just have to dwell at heavens gates daily to stay focused.  I wish just believing in Jesus would take my pain away.  But it is a minute by minute choice and focus.  I have started this blog to encourage other mom's like myself.  I hope to be a part of your journey....I hope you find peace in your storm.  I want to post all the things that encourage me....music, scripture, pictures, thoughts.  It's a daily focus right?