Tuesday, September 1, 2015

Let's End NF

What is Neurofibromatosis?
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.
Meet my cousin Jesse:
Jesse, on outward appearance, is like any other high school sophomore. He has blond curly hair, blue eyes and an infectious smile. But Jesse is only truly like one out of every 3000 high school Sophomores. Jesse was born with a genetic disorder called Neurofibromatosis (NF). So, unlike most other kids in their second year of high school, Jesse has already faced an unfair number of challenges in his lifetime. Most 16 year olds are just beginning on their journeys of life and face the normal stresses; whether or not their peers will like them, if they are going to wake up with a new blemish in the morning, how they will do on the upcoming Science test and other similar woes. Jesse shares these concerns with his peers, but his fears extend far beyond. Despite all of this, Jesse has hope.In his short life, Jesse has already had to visit numerous specialists and undergo procedures, tests and surgeries that someone else his age would not have had the need to do. Each day he faces the fact that a new tumor could grow and make the already daunting tasks of learning and socialization, even more of a challenge, not to mention the threat that they might pose to his life. (Sixty percent of kids with NF struggle with learning problems and are at a 20% increased risk for malignancy.) He worries that that he will require yet a fourth surgery to even out the growth in his legs and will not be able to reach his full growth potential (NF causes bone abnormalities and short stature). He has concerns about the multiple spinal tumors that are growing along his nerves and could leave him in debilitating pain. For the icing on the cake, he has to worry that the dermal tumors will grow in places that others will see and cause people to stare and whisper. There is presently no cure for NF, but Children’s Tumor Foundation is trying to change that. Jesse and his entire family work tirelessly to raise money and awareness of this progressive and highly unpredictable disorder. Jesse and his family have hope for his future, despite the statistics and the lack of a cure. Great strides have been made in recent years and many clinical trials exist today that did not exist when Jesse was first diagnosed at 6 months old. Jesse’s family will not stop their efforts to increase the odds for Jesse and all of the other kids who are born with NF each day. NF can occur in any family through a spontaneous mutation, as in Jesse’s case, or it can be passed from a parent with NF to a child. At first glance, Jesse might appear no differently than his classmates at this stage of his life, but if you spend a few minutes getting to know him, you will understand that many differences do exist indeed. He can’t read, write and process information at the same pace as his peers, but that only means he will work harder. His love for baseball has been restricted to the sidelines due to the fragility of his bones after several surgeries. Where he once inspired a team of 10 and 11 year olds on the field, he is now forced to sit it out and watch.Jesse does indeed inspire. He goes through his life with a smile on his face and his head held high. He doesn't consider his plot in life unfair; in fact, he often reminds others that many people are far worse off than he is. Jesse’s compassionate nature and hopeful outlook will serve him well in his life. Above all, his involvement in fundraising and participation in efforts to further research will mean that he will always have hope.Thank you for supporting the Children's Tumor Foundation. Your contribution is greatly appreciated.
Help me support Jesse by purchasing a card to encourage your friends while 100%
of the proceeds go directly to Jesse and to END NF!

Here is my proposal... lets raise some money for NF!
 I created this card with NF colors:
The inside reads: You Got Me!
Cost is $5.00/card
(Includes Shipping, the more you buy the more Jesse and END NF receive)
Contact me for details!
Thank you for your support!
Loads of Love!

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