My wonderful wife, Amy and I were married in June of 2018. Over the past year, Amy and I have been struggling to get pregnant. After some initial testing, we found out that we aren’t able to have children the natural way. The only way we can hope to have a child is through IVF. We are also considering preimplentation genetic testing to see if any embryos have any genetic disorders that can be life threatening or hinder the child’s quality of life. More on that later.

 

  A little about me, I teach high school special need students in an urban community school, just outside my lifelong hometown. In the first few years of my career, I taught 5th-10th grade. I often hear, “Wow, that’s amazing, you must have a lot of patience.” or “Bless you for what you do.’” However, most people do not understand. I’m not interested in having a much needed, noble career. Rather, the purpose behind my career choice is to give back to the society and to the education system which molded me-a person with mild special needs.

 

I was born with an extremely rare congenital (at birth) disorder, Schizencephaly. Roughly 1 in 65,000 people are diagnosed with this disorder. It was so rare and unknown when I was diagnosed, my brain scans were put into a medical school textbook at The University of Cincinnati!  It is not known exactly why I have this disorder. One possible explanation is that my wonderful mother, a ER nurse, may have contracted something viral during her pregnancy. Being a nurse in the emergency room, it is quite possible that she may have become sick on the job during the pregnancy or was exposed to something viral. Ultimately, we just do not know and we may never know. Research since then has shown that Schizencephaly may be caused by environmental or genetic reasons. The possibility of it being genetic though worries me.

 

That’s why Amy and I  would like to do preimplentation genetic testing. We obviously do not wish our child live with this condition. But the cost of IVF plus genetic testing is staggering. As a teacher in an urban school, and my wife, who is a warehouse worker, we don’t make a lot in salary. The expected cost for our IVF is about $21,000. That’s for just 1 round of treatment, before insurance. If it doesn’t take, you have to pay for another round. Health insurance typically does not cover much of the cost.

 

Many people don’t know what Schizencephaly is. They hear that and think of schizophrenia. That’s not the case at all. In simple terms, I have a small cleft (a hole) on the left side of my brain, making my Schizencephaly unilateral. A bilateral condition would mean clefts in both sides of the brain. How the disorder physically affects me is this:

 

I have blindness in my left eye, seizures( very well controlled with medication), a slight speech slur, and weakness and low muscle tone in my right arm and right leg, which makes my legs uneven. I have the outward appearance of someone who has had a stroke or mild case of Cerebral Palsy. 

 

By the grace of God, I was lucky enough to have the best parents ever who raised all 3 of their sons amazingly well. All three of us were honor students, Eagle Scouts, and we consider ourselves successful. As stated above, I’m a teacher and my younger brothers, a pair of twins, are in college. One is in nursing school and the other is studying to be an electrician. I’m so proud of both of them. Growing up was difficult for me but still so great because of the love and support I received from my parents and my brothers. My parents never let me play the “poor me card.” I was supported, loved and was given the tools and life skills needed to do everything in life. I earned my Eagle Scout badge, one of my biggest achievements, in the same troop where my father earned his. My beloved and late grandfather was a scoutmaster of the troop. I struggled initially some years in school, but my parents worked tirelessly to get me through the rough years. Once in high school, I flourished and became an honor student. I played football and ran track. And I also made some lifelong friends. I found that I just needed to work harder to get everything I wanted and I had to earn it. It made me a stronger,  moral person.   

 

A few years after finishing college, in January of 2016, I met the beautiful woman who eventually would become my wife, Amy Majdalani. It’s cliche I know, but it took only a few dates before I knew I wanted to marry her. We clicked and fell in love easily and quickly. I started wedding ring shopping after 5 or so months of dating and proposed to her after 7 months of dating. We waited awhile to get married, until I had a more stable, well-supporting career. We married in June of 2018 at the church to which we now belong. We bought a nice home in the town where I have lived in my entire life. We have a wonderful home, 4 bedrooms, 1.5 baths and a gigantic fenced backyard in a quiet and quaint neighborhood. Despite living a great and amazing life, there’s just one thing missing- a child. 

 

I loathe the idea of begging and asking for donations for IVF treatments but for the sake of my wife, I’m out of options. We just don’t have $8,000-$12,000 dollars to cover our expected out of pocket costs. Luckily Amy’s health insurance is expected to cover some of the procedure, so we believe we  need to raise  $8,000-to $10,000. The genetic testing that we may need to make sure our child doesn’t have Schzencheply like I do, is expected to cost about $5,000 (included in the $21,000 figure).  

 

So we’re asking for donations, no amount is too small!  We want to start IVF as soon as possible so we can have the baby born in the summer while I am out on summer break.  If by the grace of God, we fund raise more than needed we vow to donate any extra funds raised to either the World Wildlife Fund or towards rare disease research.   Thank you for taking the time to read this and God bless!

 

Joshua and Amy Goulet!