Two years.

Two years ago we were enjoying this beautiful little face.  She had come out screaming and yelling and didn’t stop for two nights straight.  Mark and I knew our streak of quiet-sleep-through-the-night newborns had ended.  We couldn’t have cared less though, we had our Emmie Mae.  Our beautiful third little girl.

Our lives, like so many others who have walked the diagnosis road, were rocked to the core when we learned the word.  Our diagnosis…Neurofibromatosis.  We knew Emmie was making her very own unique mark in the world like all of our other kids.  But, this word was a constant reminder.

We spent that first year educating ourselves. That first year was a flurry of doctors visits, tests, and a surgery.  That first year was a year of learning to advocate and lead in providing the best possible care for our daughter.  We now know every road that leads to a Children’s Healthcare in Atlanta.  We now know we have some of the best doctors in the country right near us.  We now know how to speak up.  We now know how to stand up.  We now know how to educate others. Then the second year came.  And joy entered in.  We rejoiced in the value of living in the moment.  Trusting God with the future.  We rejoiced in loving fast and holding tight to each precious memory we made.  To each toddler firsts she accomplished.  We had joy as we lived with a diagnosis, changed a diape, broke up squabbles and just lived.  

Neurofibromatosis.  It’s become a part of our life.  A part of our ministry.  A part of our story.  A part of His glory.  We hope to continue to raise awareness and to share our story as we continue on this NF journey.

On World Neurofibromatosis Awareness Day this year, I want to share a few facts:

• NF is a genetic disorder which actually includes three different disorders:  Neurofibromatosis Type 1, Neurofibromatosis Type 2, and Schwannomatosis.
• All three disorders can cause tumors to grow on nerves.
• One in 3,000 births gives us a sweet baby born with NF.  That is more than cystic fibrosis, muscular dystrophy and Huntington disease combined.  NF is the least known, most common, rare disease.
• NF can cause blindness, deafness, physical deformities, amputations, and learning disabilities…that’s just a few things.

For more information or to donate to research to end NF, go to Children’s Tumor Foundation.