Awesome Addie's Journey

Addison Jacobs was born on 1/13/15, one month prematurely with unknown underlying medical issues. At 6 months old she was misdiagnosed  with Jeune Syndrome. At 9 months old, she was genetically confirmed with a diagnosis of Shwachman-Diamond Syndrome. A syndrome similar to Jeunes but with different symptoms. Shwachman-Diamond syndrome (SDS) is a rare autosomal recessive disorder characterized by exocrine pancreatic insufficiency, bone marrow dysfunction, leukemia predisposition, and skeletal abnormalities. She was born at Penn State Milton Hershey Medical Center, which is where she receives her primary care. She was just recently seen at Children's Hospital of Philadelphia at their Center for Thoracic Insufficiencies where she was evaluated for the VEPTR surgery. The VEPTR surgery is a surgery that will expand her ribs. They would place an expanding rod on either side of her ribs which will gradually expand her rib cage as she grows, for approximately 15 years. The survival rate of this surgery is at 68%, but without surgery there is an early adolescent fatality rate of 70-80%. Addison requires alot of care with all of her complex medical issues that she has. She is currently on a feeding tube to aid her in gaining weight, which she will need to gain a certain amount to undergo her future surgeries. All of her medical necessities, trips to Philly for her care and time off work creates a financial strain for our family and we are reaching out for help. We will continue to keep this page updated as she will be constantly undergoing surgeries and many other things. Addison also has a Facebook page, which I've provided the link for below. From our family to yours, we sincerely appreciate your generosity, thoughts and prayers ♡
www.facebook.com/awesomeaddiesjourney