Micah and NF1 -   So Much More

I came into contact with @CWTUK via Twitter. I am a Healthcare Informatics Consultant and Blogger, known to many as @EMRAnswers. I write about healthcare news and views, software offerings, physician practice management, mobile health and patient safety issues. I am quite a disruptive force for patient advocacy and I walk as patient #117 in #thewalkinggallery.

I was asked to write a blog about my son Micah. You see, Micah has Neurofibromatosis 1. He was diagnosed at 14 months of age. He presented with more than seven of the "Cafe Au Lait" marks which are common to kids with this baffling disorder. We thought they were freckles, or pigment changes on Micah's skin, they were small, they didn't hurt or cause any concern. Yet, the pediatrician sent us for a series of tests and genetic counseling, and we found out that these were indeed part and parcel of the baffling puzzle known as NF1.  Micah's NF was probably the result of a spontaneous gene mutation, as are many of the NF cases in every 

3-4,000 births. Micah was diagnosed with the Lisch nodules in the iris of his eyes at 4 years old. At that time he "presented" with the two criterion necessary to give him a confirmed diagnosis of Neurofibromatosis.  

These pictures depict a line of sweats and tees we created, appropriately called "Micah's Tees", to raise money and awareness of NF. We sent them to every celebrity we could think of in the US and abroad, and adorned them on all of our family and friends.  We sold them at craft fairs and art gatherings.  We gave away more than we ever sold, as not one celebrity ever responded to our mailings. Instead, we outfitted his pre-school in them, and gave away "Micah's tees" as gifts to every one of his friends at birthday parties and celebrations. Any occasion was a reason to give away another tee and raise awareness. We had two dinosaurs and a globe of the world. Each dinosaur sported  cafe au lait spots,and the globe displayed "Peace" in five languages. Micah set the words, and I created the pictures.

You can see these below.

Teach Us Peace

He Walks on Two Feet

Micah at 3 Years old

Micah s tees on his Pre-School class

Micah was known as "Micah the face" in pre school, as he was always smiling, and happy.  He created songs and jokes and cards for his school, participated in talent shows and art fairs, and told everyone that when he grew up he wanted to be a "Scientist, a Doctor, and a Waiter at the Macaroni Grill". He was easily amused, and laughed if you even pretended to tickle him. He  played in soccer tournaments and baseball leagues. He liked  football and volleyball and tennis. He loved to run and to swing and to play hide and go seek. He had a dog named Coco the Wonder Dog, and a cat named Buzz Lightyear. Nothing stopped Micah from living his life and enjoying every moment. Especially not NF.

Micah is a teenager now, and he attends a High School for the Performing Arts. His "Art" is voice and theater, and he sings in a rock and roll band, and with his school choir troupe. He performs at the Hard Rock Cafe in Nashville and has played at the Hard Rock in Memphis, even on the grounds at Graceland.  In addition he was chosen to sing with a well known singer, Rick Recht at a children's concert.  Here are a few pictures of Micah singing:

Hard Rock Cafe Nashville

Micah on Beale Street during "Memphis in May " at the Hard Rock Cafe

In addition to singing, Micah is an active member in his synagogue youth group, attends Camp Ramah Darom in Clayton Georgia each summer and just completed leadership training to be a counselor in two years.  

Micah at a Youth Group Convention in Atlanta

Micah with his Camp Group in Hershey Pennsylvania this summer

Micah as "Moses" during a Passover Seder

Micah is a strong, resourceful, creative and talented human being. He loves Science, and tested out as being in the upper 97% of kids in Science while in grammar school. He even got to attend Vanderbilt's WAVU Program for kids with exceptional talent in the Sciences. This is despite mild cognitive learning difficulties. Nothing holds him back! 

Micah's message to kids with Neurofibromatosis is simple: Be everything you can be, never let limits, or words define you. Sing, dance, play and excel. Neurofibromatosis is part of your genetic make up, yet it is not who you are. You are talented, and beautiful and SO MUCH MORE. 

He is now a junior in high school. We hope to keep up with this blog and let you know of the cool things Micah is doing in the coming years. We look forward to continuing with @CWTUK and helping with fund raising efforts. You can write to us via linda.stotsky@gmail.com

YOU ARE SO MUCH MORE  \(o_o)/