Hope... Page 5



The Journal: 1987

Our oldest daughter, Rosemary, is in love with Mark Anderson and they want to marry.  In the midst of this happy news, the memories of our sons' deaths have come crashing back.  There are questions that must be answered.

During work on my doctorate at Northeast Louisiana University, I routinely used computer searches of the professional literature for my research.  I have used that research tool in a race against time as I seek to determine who is doing the best work with SCID babies and what is the current status in the research and treatment of this killer.  If Rosemary and Mark want to have children, they must know what their odds are...

My literature search during every free moment of my personal time has supplied leads which have turned into dozens of telephone calls and letters to all points of the compass as I narrow down the names of the top people in the field, both researchers and clinicians.  One name stands out in the research from all of the others:  Dr. Jennifer Puck at Children's Hospital in Philadelphia.  I have obtained the autopsy and research information reports on Elton III and Jud from Baylor College of Medicine, and have forwarded that material to Dr. Puck.  She is trying to isolate the gene that causes X-linked SCID, and she is very interested in our family history.  I pray that she can help us, and others like us, find the answers...


The Journal: 1988

Rosemary is pregnant.  Dr. Puck has agreed to do carrier testing on Rosemary and me.  We are to send her 50 ml. heparinized venous blood by Federal Express...

Rosemary is a carrier.  Her unborn child is female,  and so there is very little chance that our first grandchild will have SCID.  It is theoretically possible for females to be affected with X-linked disorders, but this has not been previously described in X-linked SCID.  We are cautiously optimistic...

Ainsley Scott Anderson has been born, and is free of the syndrome.   She is perfectly healthy, and also does not carry the flawed genetic marker.   Her children will not be affected by the SCID horror.


The Journal:  1990

Rosemary is once again pregnant, and this time the unborn child is male.  Dr. Puck has determined through prenatal blood tests that he has SCID.   Dr. Puck and others recommend that Rosemary see Dr. Rebecca Buckley at Duke University Medical Center.  We contacted her, told her of our situation and family history, and Dr. Buckley agreed to care for Rosemary and to see us through this trauma.   She told us that she had not been able to save every child, but that she understands exactly why she has lost the ones she has...

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Dr. Rebecca Buckley is the J. Buren Sidbury Professor of Pediatrics and Professor of Immunology at Duke University Medical Center

We have learned that Rosemary's daughter, Ainsley Scott, is a perfect marrow match for her unborn brother.  There was a 25% chance of her being a perfect match, or what the doctors call an HLA identical sibling.  This match lessens the chance of her brother's getting GVHD.  Dr. Buckley is being very cautious because of the experience our family had years ago with Jud and Allison being a perfect match.

Mark Kent Anderson was born - with XSCID (the first case diagnosed in utero) - and has received his big sister's marrow.  There is no evidence of GVHD.   Dr. Buckley told us that Mark Kent is the youngest child ever transplanted (he was eight days old when the procedure was done) and the first in which 99% of the T-cells were removed with an identical match.  It seems we are making medical history...


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