Invitation to the National Institute of Health

On August 9, 2017 my mom came to me with a message that was left on our phone.  She told me she believed it was a doctors office that had called and she took down the number for me to call them back.  Two days later I was able to return the phone call and on the other end was the doctor and his assistant telling me the news about finding the gene.

As the doctors explained to me how everything had come about with the finding, I stood there and was just shocked that this was happening.  While I dreamed it would happen, I didn’t believe I’d see this discovery in my lifetime.

The doctors explained to me that there was another doctor that they were in contact with and I agreed that they could share my information with that doctor as well.  I then got an email asking me to call the doctor on his cell phone (and when I read that I was allowed to call him on his cell phone, I thought “wow this really is a big deal”).

I was then invited to go to the National Institute of Health for a week where they planned to do studies and tests and learn more.  When I got the invitation to go there I called up my aunt and told her “the doctors want me to go to a place called the National Institute of Health”.  She was beyond excited and then explained to me exactly what the National Institute of Health was, since I had not heard of it.

For the next few weeks I was emailing back and forth with the doctors and making plans to go to the NIH.  In that moment in time I knew my life would be forever changed and I would do whatever was needed to help.  This is my purpose.

I remember in one phone call that we had, the doctors were telling me about certain health issues that they saw occurring in other cases, and as they were listing them I was responding “yes I’ve had that” or “yes I have that”.  I remember thinking how amazing it was that I was able to confirm things doctors were thinking.

While I grew up wondering if the things I went through was just something I dealt with or was it part of my dwarfism, now I knew it was in fact part of my dwarfism.

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