New Year’s Obsession

My hope for 2019 isn’t necessarily a hope – it is an obsession to cure my son’s neurological disease.

I reflect back to my family this time last year.  We knew Maxwell was developmentally behind his twin sister Riley but we still clung to the dimming chance that he was just a late bloomer.  Test results continued to come in worrisome but there were no answers.  My eyes were nearly swollen shut from crying at night, crying in the shower, crying in my office bathroom and crying in the car as we struggled to even tell close friends that Maxwell was not okay.  The words could not come out.  I remember feeling terror and panic so strongly my arms would go numb and I could barely breathe.  We never could have imagined or prepared ourselves for the road laid ahead.

We finally received Maxwell’s devastating diagnosis in May.  The diagnosis was actually worse than some of the worst case scenarios I had created in mind.

I sat with numb disbelief. 

How could this happen?  Why did this happen?  Why couldn’t it have been me? 

I pleaded with God to allow me to trade places with my sweet boy.  Total defeat and depression would have been easy in that dark moment and I may well have chosen that path if the diagnosis was for myself.  But it wasn’t for me – it was for my baby, Maxwell Norman Freed.

The remainder of the year was a blur. 

We walked out of Children’s Hospital with the diagnosis and I frenetically began calling scientists.  Days consisted of physical therapy, occupational therapy and doctor appointments for Maxwell while balancing special time with Riley.  Every nap was an opportunity for a call with US-based scientist.  Nights were reserved for calls with people in Asia and Australia, applying for a 501c3 status, rallying affecting families, building a website, organizing a 50 scientist symposium, etc.

I could hear a clock ticking every time I tried to sleep knowing I was losing precious hours that could have been spent saving Maxwell from this disease. Even now, I often feel like an outsider looking in, like this couldn’t possibly be happening to our family, to our Maxwell.

One of the highlights of 2018 was receiving the call from an elite group of scientists with the news they were committed to developing a cure.  I remember the EXACT moment.  I was holding Maxwell when I saw a Dallas area code appear on my phone.  I quickly answered the call, nearly dropping Maxwell in the process and tried to speak in my professional voice even though my legs were shaking.  Tears of joy and relief streamed down my face as the scientists said they could help.  Mark was watching this crazy chain of events unfold and like any committed husband and father, kept asking what was going on as I shushed him and tried to take notes.  I touched the end button on my IPhone and started screaming.  Mark and I danced around the kitchen with the babies as we celebrated the news.    

The therapy will require a substantial fundraising effort. 

It is and will be very difficult to raise $1,000,000 over the course of the next year to ensure the therapy advances from bench to bedside.  But, I am able to fight for Maxwell in ways I never could have fought for myself.   That is what mothers do for their children.

As 2018 comes to a close, I thank all of you for fighting with me and following my story into 2019.  There are 7,000 rare diseases in existence today.  My prayer for 2019 is the SLC6A1 is no longer on that list.  Our journey will provide a blueprint for the next Maxwell Freed and their family in this world. 

 

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