I came across this Q on one of the “mom” sites I stalk… What a loaded question…for those of you who know me.. your thinking… ::gulp::… those who dont know me… here goes…I live this book… my daughter was born with Diamond Blacfan Anemia a rare genetic bone marrow failure disease. Requiring blood transfusions evern 2 weeks and was innundated with multiple birth defects.She needed a stem cell transplant to rid her of the transfusions that were bogging down her heart and organs with iron overload. The only way her doctors would transplant her was with a perfectly matched sibling. And cord blood stem cells if possible. We had already decided to have A LOT of kids, so we were confidant that eventually we would get her match, and we did… Jordie, the 8th of 10. We had tried to go the PIGD route. But at the time Kylies faulty gene was unknown and we were turned down, because although they could guarantee us with a baby the was a perfect match, they could not guarantee that the child would not have DBA as well since the cause of our daughters disease was still unknown. Since then her gene was discovered, RPL5, but I am no longer able to have kids and thankfully Jordie was concieved naturally and was her match. So in 03 we tried to transplant but Kylie went into liver failure after her first dose of busulphan because she had EVB and we did not know it. It was not untill 05 that drs had been able to create an experimental transplant regimine specifically suited to her livers needs. And on 05/05/05 Kylie recieved a new chance at life. But the egraftemnt initially failed and the doctors asked us to prepare for the need to harvest peripheral stem cells from our daughter Jordyn who was not yet three..Peripheral harvesting comes with its own set of risks… That was when we realised the moral dillema we were smack dab in the middle of. And how it would effect us forever…It was then that we realised that Kylies survival may depend solely on her sisters willingness to be her donor. Should Kylie need platelets? plasma?? more stem cells??? PART OF HER LIVER?? how do we risk one daughter for another??? Kylie was able to regain her engraftment without needing more stem cells from Jordyn, but we cant help but still feel like we are always waiting for the next shoe to drop. Kylies transplant was a “mini” and her disease COULD come back.. And it is a very real possibility that one day we may again have to look to Jordyn to save her sister. How do you make that choice?? This book was a true glimpse at what its like to be a family like ours. AS parents Joe and I have similar fears but different ideas as how to go about it. Our children all went thru hell with us, But, despite it all we have remained triumphant,, and stronger for it. I knew that I couldent go see this movie in public.. I am almost inclined to request a local theatre to allow a private viewing for me and a few parents I know in the same dilemma. I cried thru the whole book.. I couldent sit surrounded by strangers..and watch as my heart and souls greatest fears played out on the screen before me. I would feel more then naked.. When I heard the ending was changed. I was disgusted. and decided that I dont even want to see it. The emotional trauma and the physical exhaustion that comes with it is too much to end up aggrivated at the end! Not all stories have a happy ending.. and its a shame that they changed it.. the reality is bad things happen..the ending should have been left. (i wont spoil it for anyone) Maybe when it comes out in DVD..in the privacy of my home.. maybe.. till then.. my own life will suffice… sorry it was so long… its only half of what i REALLY wanted to say! lol..my daghter has a caringbridge page that we started in 03 to chronicle her journey..www.caringbridge.org/nj/kyliejae
this is Kylie on left and Jordie on the right, celebrating Kylies 4th “transplanniversary” on 5/5/08 Cinco De Mayo! OLE!

and for this year…05/05/09

SO…now that my mind is drifting back to all the “what if’s” and “what is still ahead for her/us” I must bid you all farewell.. the kids are all dressing up “fancy” for a tea party and I have GOT to get pictures of THIS!!!

much love. H

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