Our Story

Our story begins with a lovable little boy named Levi.  My son was born in February of 2010.  There were no complications at birth and from what we could tell at the time, he was a perfectly healthy baby boy. A couple of days later we headed home with our newborn son.

Six months later we were at the pediatrician’s office discussing our concerns. Levi wasn’t hitting some of his milestones.  He didn’t have good head control. He wasn’t rolling over or sitting up.  We have two other children at home so we spent a lot of time comparing their development.  The pediatrician didn’t seem overly concerned as she told us that some children just develop a little slower. 

At eight months we were back at the pediatrician’s office with the same concerns.  Over the past 2 months, Levi hadn’t really made any progress.  When the pediatrician looked him over she described him as “floppy”.  When she would pick him up under his arms, he would just slide through.  She diagnosed him with hypotonia which is a state of low muscle tone.  She went on to refer us to a neurologist.

We were a little nervous when we arrived at the neurologist office for the first time.  I couldn’t help but think that there had to be something severely wrong if we were seeing a neurologist. I wrestled with the fact that, other than meeting his milestones, he looked pretty normal. The neurologist asked us a lot of questions about his brief history and the pregnancy.  Afterwards he examined Levi and came to the same conclusion as the pediatrician.  In order to determine what was really going on, we would have to dig a little deeper.  We would start with an MRI.

A few days after Levi underwent the MRI we received a call from the neurologist’s office.  The doctor wanted to meet with us. I knew this couldn’t be good if the doctor was calling us in.  We arrived the next morning.  The doctor sat us down and explained to us that the myelin in Levi’s brain wasn’t filling in correctly. Myelin is a material in your brain that forms a sheath around the axons and neurons.  It is essential for a proper functioning nervous system and ultimately effects muscle movement. He went on to tell us that not only did he think it wasn’t filling in correctly but that it was degenerative.  Based on what he was seeing, he believed that Levi had adrenoleukodystrophy, also known as Lorenzo’s oil disease. We would need to do a genetic test to know for sure but the doctor was pretty adamant that this is what he had.  The prognosis is poor and death can occur from 1 to 10 years after the onset of symptoms.  We were in shock.  I remember looking at my wife and child and wondering if this was really happening.  The test results would take 6 weeks.  We left the neurologist not knowing what to do next.

I would call the next 6 weeks one of the darkest times in my life.  It was agony waiting for the results of the genetic testing.  During that time we took to the internet to find out all we could about this disease.  The more we researched the more we began to question the doctor’s diagnosis. Levi just didn’t seem to have enough of the symptoms for that diagnosis.  After weeks of waiting, the results finally came back…. Negative!  He did not have adrenoleukodystrophy.  I cannot tell you how happy and relieved we were to get this news. We still didn’t know what was going on but were happy to know it wasn’t this. Shortly after we decided to switch neurologist as we felt that our current doctor had used poor judgment in how he handled our situation.  

A couple more MRI’s would show that whatever was going on in his brain was not progressive.  We did a few more test but they all came back negative as well.  We accepted the fact that we may never really know what was going on with Levi.  Our new neurologist, based on his symptoms, finally diagnosed him with Cerebral Palsy.

We spent the next year taking Levi from appointment to appointment.  Whether it was a therapy or a doctor’s office, it seemed like Levi had somewhere to be almost every day. We were beginning to struggle with all the appointments and paperwork in addition to getting our two daughters to school and their activities. If it weren’t for the reminder calls from the doctor’s offices we probably would have missed more appointments. There had to be a better way.

In June of 2012 we attended the Family Café Conference in Orlando Florida.  This conference was centered on the families of special needs children.  We learned so much at the breakout sessions.  One session in particular that I was looking forward to attending was about getting organized.  I thought for sure that somebody had figured out the magic way to get our organization issues under control.  Halfway through this session I realized this was not the case.  The first thing they did was hand out a bunch of templates that could be copied, notated and placed in some kind of binder.  Some people had a new binder for every year in which they recorded their appointments,  new contacts, milestones, goals or whatever else they felt they needed to keep track of.  Now I have been in the software industry for nearly 20 years and I could not believe that people were still keeping track of things this way.  How do you find anything?

After the conference I went home and started to research websites and applications that could help me get more organized.  There are applications for contacts and applications for tracking appointments.  There are applications for tracking expenses and applications for tracking medical history.  I didn’t find much when it came to tracking milestones or goals or some of the other items I needed to track for Levi.  In the end there wasn’t anything I could find that pulled all of this together in one place. I wanted to reach out to other families and see if they were struggling with the same things I was encountering.  Again, I struggled to find an online community to involve myself with.

I took my story to a few close family and friends who are also in the software business.  I told them that I first wanted to build a community where people could share stories and experiences that others could benefit from.  Next I wanted to build an application to help families manage their days better.  It should be comprehensive but simple to use so users can enter and pull information quickly.  They all graciously agreed to volunteer their time to help me with my project and The Levi Project was born.

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