FA Family Newsletter Fall 04 - Fanconi Anemia Research Fund

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