FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

Karly’s Storyby Nancy RossOur daughter Karly was first diagnosedwith idiopathic thrombocytopeniapurpura at her pre-kindergartenphysical when her plateletscame back a low 86k. We spent thenext 2 years watching her plateletsand then her white and red countsdecline. Finally in October 2002 shehad a series of tests that revealed theshocking result: Fanconi anemia. Allof the little symptoms Karly displayedover the years now made senseand fit into the package called FA.Things moved quickly from there.At age 7, Karly’s counts were all low,so my husband and I decided a bonemarrow transplant was our bestoption. We were referred to theKaiser’s bone marrow transplant specialist,Peter Falk, MD, in Los Angeles.Although nobody in our familywas a match for Karly, among her500 registry matches we found theperfect match in a 23-year-oldMarine. On March 26, 2003, Karlywas transplanted. She did very welland now has excellent blood counts.Editors’ Note andDisclaimerStatements and opinionsexpressed in this newsletter arethose of the authors and notnecessarily those of the editorsor the Fanconi Anemia ResearchFund. Information provided inthis newsletter about medications,treatments or productsshould not be construed asmedical instruction or scientificendorsement. Always consult yourphysician before taking any actionbased on this information.We got our first chanceto attend the Fanconi AnemiaFamily Meeting in thesummer of 2004. We flewfrom our home near SanDiego, California to theother side of the continentin Maine. This was thefirst time Karly got to meetkids “like her.” It was awonderful (if draining attimes) experience. We werea bit nervous at being firsttime attendees, but thefamilies were welcomingand supportive. I learnedso much and feel moreempowered to be Karly’sadvocate. From Karly’s perspective,Camp Sunshinewas a blast!! She enjoyed allthe activities and madenew friends. We are lookingforward to going backnext year, this time withKarly’s dad Les and brotherKyle.Being 18 months posttransplant,life has gottenback to “normal.” Karly is off allmedication and remains strong andhealthy. Although we know nothingis guaranteed, we feel we’ve beengiven the gift of time with her. WeKarly enjoying herself thoroughly with Sullyat the Family Meeting.appreciate life so much more now.We spend more quality and quantitytime together. We thank God everyday for the gift of our precious littlegirl. ◆“Each day comes bearing its own gifts.Untie the ribbon.”~ Ruth Ann SchabackerFall 2004 7