Ed note: During May, NF Awareness Month, we are posting stories of individuals and families living with and overcoming the challenges of NF. If you’d like your story to be featured please email ggleeson@ctf.org with an article of approximately 500 words, and your picture (or your family’s picture). If you like this story please share it with your friends and family via email, Facebook, Twitter etc. To help spread awareness this month we are also introducing the tag-line “Help make NF Not Forever'” and the Twitter hashtag #NotForever, together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.
In March of 2009, we became a statistic. We found out that we were raising a child with neurofibromatosis. With no family history of this disorder, we didn’t know how to pronounce it, much less how it would impact our lives. Miley Cyrus said it best in one of her songs, “Life’s what you make it” and those lyrics never had meaning until now.
Our son, Ethan is living with NF1. I can remember sitting, listening to the genetic counselor tell us that “this will take 10 years of your son’s life*.” What a hard thing to hear, yet we took that and learned that we could either see all the bad associated with NF and all the struggles that might be a part of Ethan’s life or we could just let it be. We chose to just let it be. Our faith and belief in God, tells us that Ethan was given to us for a reason. We look at Ethan and we see the good side of NF. We don’t see the non-verbal learning disability. We see the whiz at math and the boy who loves to build. We look at Ethan and we don’t see the problems he has faced with migraines. We see the brave fighter, who knows his limitations.
We didn’t discover Ethan’s NF until he was 5 years old; which meant that he had already cleared so many hurdles. As a family we pray for those who are struggling each day with new challenges related to NF, and we know that the road for Ethan is uncertain. Yet, we do not treat Ethan any differently than we do his two younger sisters. Ethan is a strong, smart and caring little boy who has a servant’s heart. His smile and warm hugs bring joy to so many. Life iswhat you make it and the sky is the limit for Ethan. We are truly blessed.
– Ethan’s Mom, Heather
*It is important to note that Ethan’s genetic counselor was not speaking accurately (or frankly, appropriately) when he/she said that NF will take 10 years off the lives of those affected. NF affects people in many different ways and there is no way to tell for certain how it will affect Ethan (or anyone else) as he moves through his life. Further, advances in NF research are very much moving us toward a day when we will see treatments for some manifestations of the disorder. The Foundation will continue to fund that vital research until we have treatments and eventually a cure for all of the manifestations of all forms of NF.
To learn more about NF, please click here.
