My name is Dana Forrest and I am the proud mother of Anna, who is 12 years old and has Dyskeritosis Congenita. When Anna was 20 months old she was diagnosed with mylodysplastic syndrom. By the time she was three she became very ill and we sought a second opinion at Texas Children's Hospital, Anna was then diagnosed with Severe Aplastic Anemia. She received a bone marrow transplant in November of 2001, her brother being a perfect match. The transplant was successful, Anna had minor issues over the next 6 -7 years. She lost all fingernails and toenails and began to get discoloration on her skin, issues in her mouth, constanteye tearing, choking problems, just to mention a few. All of these symptoms were first thought to be caused by graft vs. host after transplant. In the fall of 2008 she began to have shortness of breath while playing with friends. After lengthy testing and a lung biopsy in March 2009 we learned that she had pulmonary fibro-
sis. In April 2009 she was diagnosed with DC. She spent most of the summer of 2009 in the hospital with various complications relating to this disorder.
She was able to begin school in the fall and tried to continue to remain enrolled for the year. In October of 2009 she became homebound for schooling purposes. She received a wish from Make a Wish and went to Disney in November 2009. In December of 2009 we almost lost her due to complications after a biopsy which caused internal bleeding, she stayed in the ICU for 5 days and the hospital for 13 days.
She has continued to lose weight and cannot maintain a healthy weight for her age and height. We are currently at TCH (Texas Children's Hospital) for a week while she receives TPN to attempt to help with her nutrition issues.
My main goal for writing this is to connect with others who are or have experience with this disorder. But more than that, Anna would love to connect with other children or individuals like her, she feels so alone and helpless.
I look forward to corresponding with other patients or parents.
Update: Sadly Anna passed away in May of 2010 after a long battle with DC. Unfortunately, this e-mail address is no longer valid. We offer our deepest sympathies to her family.
forrest@communicomm.com
