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 ♡+ Read More
Addie has now undergone her first VEPTR surgery in which they placed an expansion rod on the right side of her ribs. Her surgery was 6/9/16 and she is still in critical condition. Since her surgery she has had to undergo a chest tube placement and an additional central line. She is suffering from rhinovirus while being supported on a ventilator to breathe while under sedation and paralytic. The doctor's have set our expectations that we will be in the hospital for quite some time. Financially this will impact our family in a devastating way and we are asking for any assistance that you may be able to provide. Please feel free to follow along with day to day updates on Addie's facebook page. Search @awesomeaddiesjourney. Thank you so very much!!
Addie is having so many complex issues that we are really struggling to get this surgery date secured. Her VEPTR surgery next Wednesday is now tentative. Her surgeon feels that it needs rescheduled so he has more time to review all of her records more in depth so he's not missing anything. He also wants her seen by CHOP's Hematology and Endo teams. It's hard when she's seen between two hospitals and she's seen by so many specialties. Her Endo issues with her Cortisol levels have been resolved but her hypoglycemia needs to be closely monitored since she'll be off feeds. Her Hematology issues are severe, Hematology is concerned with her platelet levels and they have given her 3 months to get them trending back up or we're looking at a possible bone marrow transplant. So at this point, timing is everything and is so very crucial. Dr. Campbell promised to give me a call Monday morning so that we can discuss in length. I will update when I know more but for now we're all bundle of nerves!!!
Hi all! Update on Addie: Her bone marrow biopsy done in Dec came back clean, no leukemia! But she suffered from an infection from her g tube surgery and has been placed on a temporary intestinal nj feeding tube to allow for the site to heal. She is currently battling a virus which we hope she can fight off before her first major surgery, which is set for Feb 3. Surgery will be done in Philly and we're looking at roughly a 10-14 day stay. We are trying to financially prepare for this as Melvin will be taking unpaid time off for this surgery. If you could please share this, we would so appreciate it!! Her Feb 3 surgery is her first of 2 initial rib expansion rod placement surgeries she will have this year. We know she will persevere through this as she's endured 5 hospitalizations in 2015 and 2 ER visits this year already. She's one tough cookie and even though these next surgeries will not be easy we will be there right by her side through it all. Thank you for your continued support and prayers!!!
Hi all, We are prepping for Addie's first surgery which is scheduled for Friday, Dec 18! She is getting a gtube and a bone marrow biopsy. We will post updates on her site. Thank you so much for all of your kindness and donations, all of this allows us to be there for our girl and limits the financial strain that comes along with her condition. Thank you <3 www.facebook.com/awesomeaddiesjourney