Sweet, fierce Addi has endured so much in her 11 years of childhood, dealing with a disease that has no name and was expected to end her life by age 2. Thanks to an incredible team of doctors at Boston Children’s Hospital and NIH she has enjoyed many more years, though they have been comprised of constant care with the management of chronic serious issues and new urgent concerns arising regularly.
Addi is currently battling severe infection and complications of her disease and has been in the hospital for the past four weeks. The three key barriers are the severity of her compromised immune system, the underlying complex mystery syndrome she has and the cumulative burden of disease progression and decline in her health. The progression of the disease has been more rapid since the fall and she is now in palliative care because she's in a final disease stage. This courageous girl may fight off the infection and make it through healing from multiple surgeries scheduled for later this month, but she is still expected to continue to decline.
Under these circumstances her incredible parents, Tammy and Ian, have met her every need, bringing her out of state for her care while raising her amazing sisters Izzy and Sam. They never ask for help, and are more likely to be offering it wherever they can. The reality of the current circumstances is that they are preparing to lose their only income so Tammy and Ian can fully care for their children, in two different states, switching places to each have time with Addi, who will remain at Boston Children’s Hospital for the foreseeable future, and their other children who are at home in Vermont. No family should have to loose these precious moments or have to choose work over the care for their children going through incredible hardship. They have been dealing with this for all of Addi’s life and the time has come for us to help them. All funds raised will support the family to manage daily expenses and cover bills since they will have no other income once Tammy takes leave.