FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

FAMILY NEWSThe Sun Will Come Out Tomorrowby Kristin YoungI have to admit that I was a littleapprehensive, a little scared. My sonhad been diagnosed with Fanconianemia a few months earlier, and wewere on our way to Camp Sunshinefor the Family Meeting. It’s hard toexplain why I was afraid. I guess itwas knowing that reality was aboutto rear its ugly head. The reality thatmy baby was among the other childrenwho had been diagnosed withthis awful disease. Knowing that Iwas about to hear stories of triumphand loss from people I knew werenow part of my family, even thoughwe had never met. Realizing that thebeginning of a heavy heart burdenedwith worry for them was about tobecome a routine part of my life. Itscared me.Yet, it was so wonderful to meetpeople who understand like no oneelse ever could. And although I crieda lot, it was wonderful. It was amazingto see how happy and beautifulall the children were. It was inspiringto see how positive and strong theparents were. I met people who willforever be a part of my life, and Igained a family that I would do anythingfor. I know they feel the same.A special part of the Family Meetingwas to be able to learn about allthe recent discoveries and statisticsfrom experts in the field, yet to combinethis activity with talent showsand masquerade parties. My childrenhad the time of their lives, and Iknow I heard the same from manyother families. It was a wonderfulexperience.So yes, I still cry for all the childrenwho have to endure things noone should have to go through inWesley Younglife, but I’m also so thankful for thechance to have those four days atCamp Sunshine. The chance to meetother families is so important inhelping the heart to heal. I knowwe’ll never have to fight this alone. ◆Attending the Annual Family Meeting is “a Must” for All FA Familiesby Mary Ann FiaschettiWe just attended our very firstFamily Meeting at Camp Sunshine.Although our five-year-old son, Peter,was diagnosed with Fanconi anemiain February 2000, we couldn’t attendprevious meetings due to busy schedules.We felt no urgency to attend.Our child is relatively healthy, he hasa matched sibling donor, and duringthe past four years he did not have asocial or emotional need to interactwith other FA children due to hisyoung age. We read all the newsletters,reviewed the scientific literatureand kept abreast of anything that willhelp us when it is time for a bonemarrow transplant. To be completelyhonest, attending the previous FamilyMeetings was not a priority for us.How stupid and naïve we were!This year was different. Peterstarted noticing this spring that he isdifferent. He has only four fingers oneach hand and everyone he knowshas five fingers (except the charactersat Disney World!). Peter decided he’dhave five fingers too and refused tocount the number four. Hispreschool teacher was bewilderedwhen, all of a sudden, he begancounting “1-2-3-5.” And, he nowasks why, if he is not sick, does hehave to have CBCs every three to sixmonths and an annual bone marrowaspirate? No one else in the familydoes this. Whenever Peter has a doctor’sappointment, he puts his handson his hips and shouts “I AM NOTSICK!” So, when the invitationarrived to attend the Family Meetingthis year, and we learned that schoolschedules would not conflict, wedecided to attend. We packed upourselves, the two boys, and theirpaternal grandparents and off weheaded to Camp Sunshine in Maine.What a jam-packed four days itwas for all of us! We marveled at howcohesively the agenda for presentations,counseling sessions, andcontinued on page 106 FA Family Newsletter