FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

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Attending the Annual FamilyMeeting is “a Must”continued from 6evening activities flowed together.How dimwitted we were to thinkthat we had so little to gain byattending the Family Meeting! It wastruly an educational experience.The presenters were excellent.Each professional was also willing totalk with us outside the lecture toanswer specific questions about ourchild. They were gracious with theirtime and truly cared for the wellbeingof Fanconi anemia patients. Wewere surprised and grateful to gainsomething medically for our son fromthe lectures. For instance, after listeningto Dr. Jeffrey Kim, we learnedthat Peter has a slightly defective eardrum that is causing his difficulty inpronouncing certain sounds. We alsoare trying several ways to increase hiscaloric and nutritional intake as wellas boosting the fiber in his diet,thanks to some suggestions from Dr.Sarah Jane Schwarzenberg. AlthoughPeter has been seen previously byseveral ENT, audiology, and gastrointestinalprofessionals, they had nottreated other Fanconi anemia patientsand were not able so immediately toidentify and remedy situations. Weextend our deep gratitude to all thepresenters who attended this year’sFamily Meeting. Thank you.Enough cannot be said about the“Coping with FA” sessions withNancy Cincotta. Where on thisplanet can one sit in a room full ofadults who have had to or will haveto make life and death decisionsabout the health of their FA child?Only at the Family Meeting! We satin awe of the journey many havetaken, are undertaking, and are justbeginning. How inspiring it was tohave adults with Fanconi anemiapresent also! It doesn’t matter wherewe are on the journey, we can allprovide emotional support for oneanother. The difficulties we face canonly be truly understood by oneanother. Thank you for providingthis forum as well as for all thechocolate, Nancy! It was therapeutic.The planned activities for thefamilies were memorable. Wheneverthere was an emotional, heartfeltevent (e.g., balloon release and wishboat launch), there was somethingfun and uplifting following (e.g.,costume party and talent show).Although we felt battle-weary by theend of each day from the emotionalityof the day’s events, we were readyagain the next day for the thrillingroller coaster ride.As a family, we were truly humbledby the Camp Sunshine staff.The volunteers were so genuinelycaring and kind. What remarkablemen and women took such lovingcare of our children and us! The childrenhad a wonderful time on theplayground, using the paddle boatson the lake, swimming in the pool,rock climbing, and playing miniaturegolf, shuffleboard, and volleyballwith the camp counselors. Our familywill never forget the generosity ofThe Fiaschetti family having a great time at the Family Meeting.the volunteers. And, the facility itselfwas perfect.Every participant contributed tothe success of the meeting. However,the most cherished moments we havefrom our four-day excursion wouldhave to be of the FA children andadults. Each and every one of them isbeautiful. They humanize this dreadful,awful disease. And, they empowerand inspire us to achieve theunimaginable. The Fiaschettis areproud to be members of the FanconiAnemia Family.We were and always will be gratefuland thankful to those who contributeto the success of FARF. It isbecause of your dedication, devotion,and generosity that our loved onesare able to enjoy the successes todaythat were impossible yesterday. Wehave now learned as a family howsignificant an impact the FamilyMeeting can be to an FA family.Thank you for making it a wonderfulexperience for which we will be foreverindebted. Our advice to any FAfamily that has not attended a FamilyMeeting: mark your calendar for nextAugust and make it a priority! ◆10 FA Family Newsletter
The Long Journeyby Esmat and Rehman SaleemAmeera Saleem was born in 1985with an extra finger. At the age of 7she was diagnosed with Fanconianemia. We were not aware of thisdisease and were very thankful to theFanconi organization and the FamilySupport Coordinator; they helped usin every step. Ameera was a brave girland was a big fighter against thisdisease. She was very active and lively,always smiling, and she nevershowed that she was suffering from achronic disease. We went to Singaporein 2000 for her bone marrowtransplant, with her older brother as aperfect match, but it was very sadnews for us when we learned that hetoo had Fanconi anemia. His diseaseis stable.We came to Canada in 2003, andAmeera had a bone marrow transplanton March 26, 2004, with myhusband, a 4/6 match, as the donor.The transplant was done at TheHospital for Sick Children in Toronto.Her first transplant did notengraft, and at day 28 the cells wereinfused again, but again, she didn’tengraft. On June 8, 2004, she contractedpneumonia and her left lungcollapsed. On June 21, 2004 shepassed away and went to the peacefulworld.We always pray that medicalscience will find a solution for thisdisease and that no other familyshould suffer such a big loss. We prayfor Fanconi patients everywhere, thatGod will bless them, and that theyget well soon. ◆Johnathan Eckstadtcontinued from 8Ameera Saleemfighting spirit. He is determined tobeat this and get better so that he cando all the normal things he likes todo again, like playing basketball withall his friends and riding his bike to afriend’s house.Johnathan had a lot of faith anddetermination before and during thetransplant. That was, and still is, abig factor for him making it this far.As a mother, it has been hard to seehim have to go through all that painand suffering. I cried a lot of tearsand prayed a lot of prayers to get methrough it. All I can say to the parentswho will have to go through aBMT with your child is stay positiveand take one day at a time. My faithin God really helped me througheverything as well. I prepared myselfeither way, and I am thankful thatJohnathan has made it this far. He isstill not out of the woods, and wehave hit a few bumps along the way.He is doing well at this point. Eachday that I have with Johnathan is ablessing from God. ◆In LovingMemoryKendall Atkinson5/4/83 – 3/14/04Emile Kriegler2/2/92 – 9/12/04Matthew Lindenmayer7/3/90 – 4/22/04Randall McNutt7/3/84 – 3/3/04Benjamin Platte4/29/93 – 2/22/04Janelle Redekop4/25/90 – 6/9/04Glen Russo11/15/53 – 9/13/04Ameera Saleem9/19/85 – 6/21/04Reid Trager1/18/88 – 2/27/04Fall 2004 11
Page 1 and 2: FA FAMILYNEWSLETTER#36 A Semi-annua
Page 3 and 4: Recurring Clonal Chromosomal Abnorm
Page 5 and 6: Ear and Hearing Problems in Fanconi
Page 7 and 8: Karly’s Storyby Nancy RossOur dau
Page 9: Our Experience with PGDby KatieWe
Page 13 and 14: The Frock kids dressed for the Masq
Page 15 and 16: Why Our Family Decided To Raise Fun
Page 17 and 18: Family Fundraising EffortsFrom Janu
Page 19 and 20: Honoring the Beloved Memory ofOur F

FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

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