Sweet Nectar Society

 

PHOTOGRAPHY WITH A PURPOSE

Joeseph : Duchenne Muscular Dystrophy (D.M.D.)

We absolutely love Joe Joe! Over the past year we have been able to see Joe several times and each time we are reminded what a spunky little boy he is- ALL BOY! He loves to go, go, go and GO FAST! He always sports his big smile and big personality! On January 6, 2012, at 13 months old, Joe was officially diagnosed with Duchenne Muscular Dystrophy. His family is extremely involved and supportive in finding new treatment options to best ensure Joe’s comfort. His parents share his journey on the Go Joe Facebook page- they have created a platform to raise awareness of DMD and place for families to come together and support their ups and downs of life with DMD.

Joe’s parents recently gave us an update. “There is no approved treatment to slow progression and unfortunately the treatments that are trying to get approval will only help about 13% of those affected by Duchenne, Joe Joe not being in that population. There are some great things going on in research and we are praying that there is something in the pipeline that will help him!”

“Duchenne muscular dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures.

Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties.

Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.” -Go Joe Facebook Description. joe_4 joe_3 joe_2 joe_1

Session Info

SWEETIE SESSION

•A free photography session

•A digital gallery of images

•A keepsake book

•A platform to raise awareness

•Story shared for support

PATIENT SPOTLIGHT SESSION

Provides documentary type photography session to patients currently admitted to the hospital.

•A digital gallery of images

•A keepsake photo

FOCUS SESSION

Portrait session events designed to raise awareness to a specific diagnosis, build community, and celebrate Sweeties.

•A digital gallery of images

•A keepsake photo

(559)408.5969 | info@sweetnectarsociety.org

Sweetly rooted in California