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Wednesday, August 18, 2010

MIchelle of Everybody's Hero on NF1

I thank God every day that we are fortunate enough to have the option of letting me be a stay at home mom. My ability to stay home was even more of a blessing when our son was born with medical issues and we had zillions of doctor appointments for the first year of his life. Our little man was diagnosed with a condition known as Neurofibroma type 1 (NF1). To quote directly from the Children’s Tumor Foundation website, http://www.ctf.org/:

“Neurofibromatosis encompasses a set of distinct genetic disorders that causes tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. NF1 is also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, web characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur.
Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF also have learning disabilities.”

More specifically, my son has a plexiform (non-cancerous type tumor) behind his left eye which causes his left eye to bulge slightly. It also causes his left cheek, top eyelid and temple area to appear swollen. He is also near sighted in his left eye. The plexiform must be monitored on a regular basis through MRI’s and visits to multiple specialists in the field. Due to its location and form, the plexiform cannot ever be entirely removed. It has been one huge roller coaster and learning experience for my family.

During the creation of Everybody’s Hero, my heart went out (and still does) to all the children I met at the Children’s Hospital or similar medical facilities. Those little babies have so much strength and so little understanding of what is going on, that they are all my little heroes. This is why I named my company “Everbody’s Hero™.” In honor of the little heroes closest to my heart, my children, I donate a portion of my proceeds to the Children’s Tumor Foundation, www.ctf.org. to help further research treatments and hopefully, finding a cure. :)


April said...

Thanks Michelle for sharing your journey and creating Everybody's Hero... we need more mommies like you out there!

JustCorey said...

That is a great testimony... I'm glad you created everybody's hero and shared your story :)

(and i can't wait til the winner is announced for the giveaway! lol)