My Journey with a Disease, and Lean Startup

I was a Make-A-Wish kid. And that experience left a lasting impression on my life. Born with a rare genetic disease called Gaucher, doctors told my mother I probably only live to be 8 or 9.

I’m 32 today and am thankful to say still on treatment and now in good health. Not to say the road to get here has not been long and full of painful experiences. At the start of treat my liver and spleen were 10x and 20x normal size, and by the age of 15 bone deterioration had caused my bone density to be that of an 85 year old man.

Also it has been full of my bad choices because of a life I felt trapped in, ashamed of, and the burden I felt I caused my family for being born with a disease. These aren’t excuses or justifications for my actions, but are reasons that affected the choices I made in life.

My journey begins in April 1984, born to an amazing women, I was a normal healthy looking baby. But out of fear from losing an earlier son to Sudden infant death syndrome (SIDS) my mom requested I be hooked to a heart monitor. Thankfully it caught that I would forget to breathe, and by the time I was four months old I was labeled a failure to thrive.

It wasn’t until the age of 3 though that the testing really began. My mom said she could just feel something wasn’t right, but doctors weren’t looking for Gaucher and it wasn’t until I was 5 that they took a piece of my liver and discovered my diagnoses.

At that time there were no treatments and not much known about Gaucher. Based on the progression of the disease, Doctors told my mom I would probably only live to be eight or nine, and to provide the best life she could for my last years.

Life was great, I was surrounded by love. I knew I was different from all the doctor appointments and pain, but I had no idea how sick I was. I had grown up with my symptoms, so as far as I knew life would continue as normal.

We lived on our family dairy farm, my mom and older sister during that time. It was amazing place to be a kid. I still can remember playing in the hills and barns with my two best friends Bryce and Bryan.

Looking back as an adult, I realize I was rebellious child and trouble maker. And if it had not been for me only suppose to live a few more years I’m sure one of the neighbors would have beaten me to death.

One of our closet neighbors that lived just up the hill from Bryce and Bryan must have been saints, as we would quite often throw pine cones from the forest at their house until it covered their porch. Then promptly go to my house to color pictures, write prices on them, and return to the scene of the crime and make our victims buy our fresh artwork.

We were naughty little boys and I am sure if there hadn’t of been an expiration date set on me, discipline would have been different. Life on the farm was a wonderful experience for me and full of fond memories. And I had no idea things were about to change.

Around the age of 7 a treatment was found to combat the effects of the disease, but it was the most expensive drug in the world at the time. At over $250,000 a year for weekly infusions, and my mother being a single parent dairy farmer that didn’t have the money or insurance.

This was before the new healthcare laws when insurance companies could deny coverage based on pre-existing conditions, and living in Oregon at the time the State could pick and choose who they wanted to help with medical cost and they decided my life was not worth the cost.

My mother frantic to get the medicine I needed to survive looked into all sorts of options, Mexico, Canada, and many others. In the end only one seemed to appear possible, if you lived in Washington State below the poverty level the State had to help you with life threatening medical needs.

So my mother had to lose the farm she worked her whole life for and move with her three children to Washington State to live in poverty where we would qualify for help.

And so began the next chapter in my journey. There were four of us now, my mom, older sister, little sister, and me. My mom moved us to Vader a little town in Washington where rent was only three hundred dollars a month.

It was an odd town and an eerie house, from the skeleton key doors, to the red circle painted on the old wood floor. Later I would learn from a neighbor boy that the previous occupants worshiped satan and sacrificed animals in the house.

I never really liked that house and can still remember waking up night after night believing my pillow was covered in earwigs. Nightmares were normal kind of dreams I had living there.

Life was different than on the farm, to start with I lost two best friends, and was becoming aware of how sick I was. Every week I had to go to the doctors and get an infusion and was giving blood work all the time since the medicine was made from human placenta and I ran the risk of contracting HIV or Hepatitis with every infusion.

But, none of that got in the way of my new best friend and I from taking misbehaving to a new level. That included stealing and an obsession with fire, and this resulted in a large trading collection and burn marks everywhere.

My spiritedness was also leading to problems in school as well. ADD was the label I most heard to explain my behavior and learning disability.

All I knew was it resulted in me being duct taped to my chair in 1st grade, a special class where I got to play Oregon trail, and by 4th grade I had my own cubicle in the class so the other children couldn’t distract me :) or was it vice versa.

Just like when I was a baby and would pull the heart monitor plugs off when I wanted my mom to come get me. I knew if I told the teacher that I didn’t feel well they would quickly call my mom to come pick me up.

So quite often when I had enough schooling for the day, I would fake being sick to call it a day and head home early.

Around 5th grade, I lost another best friend as we moved again, after being on the list for over three years our name came up on the HUD housing and we moved to another little town this one called Kalama. It was a nice little duplex this time, later a neighbor boy would inform me they was called the projects.

By no means did they compare to what one normally imagines when one hears the word projects, but I was becoming aware of how my need for medicine was the cause of my family’s suffering and hardships.

If we made more than $800 eight hundred dollars a month they would take away my medicine that cost $250,000+ a year.

Becoming aware of the side effects of needing medicine began the next chapter in my journey with a new life threatening condition called depression. A disease that would nearly take my life multiple times and in the end would cause the loss of another.

I was being homeschooled now since my mom was spending a lot of time picking me up from school for one reason or another. The problem with this was my mom also cleaned houses under the table so she could provide a better than poverty level lifestyle for her children.

Thus leaving me in charge of my schooling for the most part, and since that never really happened, it in turn lead to me cleaning houses with my mom. This continued for a couple years until I convinced my mom I need to go back to school and could behave.

So my mom enrolled me in the 8th grade, into a Christian school. I was so excited to be around kids, it was a good school and I almost made it a whole quarter before punching a hole in the wall in the boy’s bathroom and being taken out by a frustrated mother.

I cleaned houses with my mom from that day on, and my mom did her best to get me tutoring, take me to the library to get books that I would read bits of, and lots of field trips to learn. I had the ideal education for my learning style, but in reality I was always angry I didn’t get to go to school.

I was also becoming increasingly angry at the unfair circumstances needing medicine created and more depressed about the life I felt trapped in. I was ashamed of all the labels put on me and hated myself for even being born and causing hardship for my family.

And I was sick of hearing how sick I was. Even after being on treatment for years by time I was fifteen I had the onset of osteoporosis, earl meyer flask disorder in my knees, and bone density of an 84 year man.

It always seemed that I was the topic of discussion every time we saw people. Its crippling how much more painful hopeless words can be than the actual condition.

By seventeen I relied on pills and alcohol during the weekend to try an escape and deal with my emotions. Eighteen, nineteen, it was the way I operated. Though my physical health was beginning to improve, my mental health was the worst it had ever been.

I longed for a way out of a life I felt punished to; I was so tired of living a less than life and having to cheat and lie just to get my medicine. I felt like I couldn’t do anything or chase my dreams or I would lose the medicine that kept me alive.

Take away a person’s hope and they will have nothing worth living for. Life becomes a battle to just get out of bed.

I was buying drugs from overseas to sell and support my addiction, I was taking life numbing doses all day long like tic tacs, twenty or thirty xanax and valium a day and every weekend I would get loaded on life threatening doses of pain pills and booze to try and find peace from the life I felt destined for.

And in July 2004 these choices would lead me to a car accident and to become the cause of another family’s pain and suffering. I can still see the night just like it was yesterday, a horror movie stuck on replay.

I am responsible for someone losing their daughter. A truth I long hid from, and can never offer enough apologizes to heal the pain I caused; I can never fix what has been done. All I can do is hope for undeserved forgiveness and healing.

Thankfully I was only sentenced to 3 ½ years in prison, and if you can believe it got out in two and a half years for good behavior. Prison lead me to God, the Truth, and saved my life.

It was an interesting chapter in my journey. Prison in USA by no means is the worse place on earth, as you are provided shelter, a bed, water, and three meals of questionable contents a day.

I know there are many people and places around the world are not afforded such luxuries. The worst part of prison is missing the ones you love and not being able to see them whenever you want.

Prison is a broken system through, much like the other systems in place. I met some really nice people in prison, some who had done bad things and some who just had bad luck.

But, ultimately prison lead me to God, and God lead me to a new Hope that I had never experienced in life before. The faith in what life was going to be like when I got out, brought me more joy than I had found outside the gates previously.

I knew life was going to be better when I got out. Unfortunately the rest of the world wasn’t in agreement and I was released at the end of 2008 into the beginning of the worst economy and job market in recent US history.

People with college degrees were having a hard time getting jobs. And this unschooled ex-con wasn’t getting any second chances.

I tired chasing the dreams I was believing in, but again was defeated by my circumstances and found my faith barely enough to breathe on, and was soon falling back into the destructive behaviors that had already stolen so much from me and others.

After a couple years of trying to find employment I found myself still living with my mom cleaning house under the table just like before the accident.

Sitting on the couch one day after a weekend of blowing what little money I had trying to escape my thoughts, I realized what a loser I was and how stuck I had become.

I really couldn’t image life without drugs and booze since it was the only place I found peace from the circumstances I felt trapped in, so I started thinking how I could stay in the party lifestyle and feel better about it.

And in 2010 I began picking myself from self pity and started working on something I believed in and had passion for.

Party for a Purpose I thought, and within a few weeks I had started a non-profit called NWProdigys. The idea was I would throw the same kind of events I liked going to, but the ticket sales and a portion of revenue from drinks would go to send kids on Make-A-Wish trips.

This was my selfish beginning into social good entrepreneurship.

A new chapter, by the middle of that year something happened and my faith returned to me with such overwhelming grace that I felt real power in my life again.

Weeks after starting NWProdigys I received multiple job offers; I never stopped applying for work even if I didn’t meet the qualifications.

It seemed though even with the selfish motives once I had started doing something to benefit others all the sudden doors started opening for me.

I took a job with a startup called Kudos Community; they were a Groupon business model with a charity aspect.

I was so excited that someone gave me an opportunity and even more about this one because I thought I could work NWProdigys into the mix.

This job was my first real experience with sales and soliciting businesses to try and sell them on an idea, a huge learning curve.

The company didn’t have good sales and marketing materials and I found myself creating my own.

And on long drives between Portland and Seattle to meet with anyone who would listen, and my bi-weekly infusion I found myself filling notebooks with ideas, sometimes not really understanding them but knowing they were good.

On one of those drives I was thinking back to when I was in prison and how I believed God had better plans for me.

I was thankful I had a job even though I wasn’t really making any money in the commission only based work, but in a barely audible voice I said “thank you God”, and immediately an overwhelming feeling came over me and I was weeping so hard I could barely see.

Then in a flash everything I had been writing in the notebooks made sense, I saw a vision of it all play out.

I saw the power positive media could have. And over the next couple months I started WeThinkItMatters Inc. in 2011 and raised about $60,000 in seed capital from family, friends, and can you believe it a health insurance company in Oregon.

Raising the money was my first mistake at startup, since I really didn’t know what I was doing or how to run a business and manage money, all my assumptions sucked.

Within a few months all the money was gone, so were the 12 people that I hired, and the product I had envisioned was a skeleton of an MVP.

That was 5 years ago, after messing things up at the startup. Back then my only option seemed to be to learn the skills to finish the product myself.

So I have spent the last four years teaching myself by trial and error, through attending to workshops and online courses; how to code, design, manage projects, and gain leadership skills.

I have worked crappy side jobs to support my learning and make small investments to grow WeThinkItMatters Inc. and create our life changing media like WTIM.

The first WTIM, WeThinkItMatters 10K Beta Campaign is live now and raising money for 3 charities working to end homelessness in the Northwest. Transitional Youth, People Matter, and Share are NPO’s serving the Northwest.

Sponsored by BridgeWorks NW a private healthcare exchange in Portland Oregon this WTIM Campaign is bringing awareness and generating funding for 3 non-profit organizations whose missions to help get people off the streets.

It is also raising prize money for Voting Members favorite non-profits and their local schools when they take action and vote during the WeThinkItMatters campaigns.

All you have to do is select charities to get money from WTIM campaigns, and if you want share the uplifting stories about the difference it made.

I am very proud of how far it and I have come over the years.

I have made a lot of wrong choices in life and continue to work towards restoring my integrity with others; I am a work in progress. And my only hope is in undeserved forgiveness and love.

I have been a lair, a thief, a cheat, and my foolishness and folly cost someone their life. I have lead the people closest to me into the darkness and now have to fight to be light.

I have been basically cruel and put the woman who sacrificed so much so that I could live through a living hell. I wasted much of my life being a victim of a disease and circumstance, and there’s nothing I can do to ever change the past.

I only have right now, and my Hope for the future. And I am thankful to say; No longer do the circumstances in my life have power over me. They are just part of who I am, and continue to teach me how precious life is.

I am very thankful to still be here today and able to share some of my story with you. Its taking me a lot of tries to write this, I always thought I’m not sure I’m ready.

I am still dealing with who I have been, but having the opportunity to face my fears has been an incredible journey for me. I can’t tell you what a difference it has made in my life to have hope.

The reason I share all this with you is, we all have struggles and hardships in life, that’s part of being human. It’s how we deal with them that matters.

You are the deciding factor in how your life turns out. You have to face your fears, stand up to your problems, find passion and purpose for your life in the moment, love those around you, and be thankful you still have Hope for tomorrow.

It so important to have hope for the future, It’s what gives us the spark to keep going. My hope is that if you feel like your spark is dwindling that you know there’s still time to turn it into a fire.

There is never a better time than now to overcome the limiting factors in your life. There’s never a better time than now to tell the ones you love how much they mean to you. And never too late to look up!

Thank you for taking the time to read a little about my journey with a disease and my lean startup. I hope you can better understand why WTIM, WeThinkItMatters means so much to me, please consider becoming a Member and taking action in our campaigns. Help make a difference for what matters to you.

I was a Make-a-Wish kid and that experience impacted my life :)

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