3rd Annual Happy Hour to End Duchenne
Date: November 2, 2019
Time: 5:30 PM - 10 PM
Where: Proper West, 54 W 39th St, New York NY
On August 13, 2015, at 3.5 years of age, Jaylen was diagnosed with Duchenne muscular dystrophy (Duchenne). Duchenne is the most common fatal genetic condition that occurs in childhood, affecting 1 in 3,500 male births. Because the Duchenne gene is located on the X-chromosome, it primarily affects boys, however in rare cases girls can be affected. Duchenne causes progressive muscle loss in the body and is caused by a mutation in the gene that encodes for dystrophin. Dystrophin is the protein that keeps muscle cells intact. The absence of dystrophin results in muscle cells being easily damaged. Symptoms such as difficulty walking, running, jumping and climbing stairs develop in early childhood, between the ages of 3 and 5. Most boys are wheelchair bound by age 12, and eventually lose the use of the upper body in their teens. The simplest tasks become difficult in everyday life. The progressive nature of the disease leads to serious complications, particularly issues related to the heart and lungs. Nearly 20,000 boys are living with the disease in the United States alone and over 300,000 worldwide. Duchenne knows no cultural, economic or social boundaries. The condition is passed by the mother, however, 30% of cases are considered spontaneous mutations, as in Jaylen’s case. Currently there is no CURE for Duchenne.
Despite his daily challenges, Jaylen is a fun-loving, goofy little boy with a contagious smile. His passion is to travel the world and hopes to add Africa, Alaska, France and Italy to his list in the coming years. He loves National Geographic and wants to be a scientist when he grows up. Jaylen keeps busy doing puzzles, legos, art, playing baseball with his town team, learning about space and loves to hang out with his friends and family. His enthusiasm to decorate the house during EVERY holiday is contagious.
We share our families story in hopes to raise awareness and funding for Duchenne. Let's give these boys/girls a fighting chance. All money raised will be directed towards gene therapy.