| Why Run From What You Can Run For?
On October 5th we will be running our first half-marathon to raise awareness and funds for neurofibromatosis, a neurological disorder that our son, Ari, was diagnosed with as a baby. Running is our way of literally taking action, of moving from acknowledging this diagnosis in scientific terms to accepting its real presence in our lives.
Ari’s condition is presently mild. He is a healthy, inquisitive, verbal two year-old with a joyful spirit and a natural gift of seeing the best in everything and everyone. Although many affected people inherit the NF1 disorder, between 30% and 50% of new cases arise spontaneously through a mutation, or change, in an individual's genes. In Ari’s case, it was spontaneous mutation (his older sister Ella does not have NF1).
Since no cure exists, treatments for NF1 are presently aimed at controlling symptoms. Annually, Ari sees a geneticist and other specialists to monitor any changes to his current symptoms—café au lait spots appearing throughout his body and a neurofibroma on the bottom of his foot. People with NF1 are prone to develop tumors that grow on nerves and produce other abnormalities, such as skin changes and bone deformities. In addition, these tumors can impair vision, hearing and even become cancerous, though that is rare. Most distressing, NF1 will express itself throughout Ari’s life and can advance at any age.
Neurofibromatosis occurs in one in 3,000 births. While more common than Cystic Fibrosis, Muscular Dystrophy, Huntington’s Disease and Tay Sachs Disease combined, few people learn about this condition unless it becomes personal. Our intent is to share our story so that, with your support, Ari can benefit from a cure in his lifetime.
We are blessed to have the continual support of involved parents. Barbie and Buddy Levine and Ronna and Marc Taub will also participate in this exercise of “active” giving by walking a 5K on October 5th with our children. We expect that once Ella realizes this day is all about her brother, she’ll demand her own fundraiser!
Please help us find a cure for Ari and others with his condition by making a tax-deductible contribution to neurofibromatosis research.
We hope you continue to define our son by his essence and not his condition. Your support and sentiments will strengthen and inspire us.
Dave, Rasheena, Ella and Ari Taub |