After finding out that Haley had Krabbe's Disease, the doctors had told us that there was nothing we could do for her. This is not to say that the doctors were wrong or misleading, but there is a small Hope out there for Krabbe's children.
While we were looking to new families for support and help, we heard about "cord blood transplants". It was CJ's mother who had first mentioned cord blood transplants to us. We had a long conversation about the transplant and her thoughts about doing it for CJ. She had explained that if the procedure had been successful but the damage done to CJ's brain could not be repaired, what then? At that time she had not made a decision yet. We still didn't know much about cord blood transplants. We needed to know what this was in hopes for Haley's life.
We contacted a family that was in North Carolina at Duke University, who was going through the testing for the transplant. Their son is a little bit older and seemed to show more symptoms of Krabbe's, so we were very hopeful for Haley. The mother of this child called us and told us that we needed to get to North Carolina as soon as we could. We called the mother back and she explained to us what had been explained to her from the doctors at Duke University. With that explanation we set out to learn more about this thing called "cord blood". As we spoke, many notes were taken and we knew where to find the information. After the conversation, we went straight to the Internet. We searched under "cord blood". There is so much information out there; we didn't know where to start. So we sat and read for hours and hours. We came across a place here in Denver that just started a Cord Blood Bank. The only thing was, it was for donations not transplants.
We called to see if there was anywhere here in Denver that would do these transplants and they directed us to The Children's Hospital Transplant Team. We called and explained our situation and the coordinator gave us lots of information. (We wanted to know if this could be done here in Colorado verses in North Carolina). All of the information we received that day was very reassuring to me.THEY CAN DO IT HERE! The coordinator said that she would have the head of the department give us a call (this was on Thursday). Friday evening while eating dinner we received a call from yet another doctor I did not know. We all talked for a few hours and he was anxious to meet Haley. We went to see him the next Tuesday and were very excited in hopes of this transplant for Haley. At that time, we had the blood draw for the HLA typing done. The doctor was very straightforward and had an open mind about the procedure. We left very excited and with high hopes for saving our daughters life.
From there, the initial testing started. We were still talking to the family in North Carolina about their progression on the transplant, exchanging stories and emotions and everything else that comes in this time of life. Blood for HLA results were sent out to many different Cord Blood Banks all over the United States. We needed to go see our Neurologist for a formal evaluation. Then we had to have a Neuro-psychologist evaluate Haley. Finally, we went to have another MRI done. To us the MRI would be the deciding point of whether or not we do the transplant. So after we had these tests done we sat and waited, not to long though. On a Friday we were waiting for a call from the neurologist, transplant doctor and the Neurological evaluation. By 2:45 PM we hadn't heard anything so we called and within 30 minutes our neurologist called with the news. There was nothing encouraging.
Once we found out that Cord Blood Transplants were an option, we were on a fast train to make sure Haley could have this done. I would recommend to anyone who has found out that there child has Krabbe's, get the testing done as fast as you can. Proceed as if you are going to do the transplant. However, don't loose touch with reality. The testing may show that the damage is too extensive.
We are happy to announce thatDalton's Page has been developed. Dalton is a handsome young man that was fortunate enough to be able to have a Bone Marrow transplant from his twin sister at about two months of age. We have been in contact with his family and they are currently developing pages for him and for his brother, Anthony, who has already passed away. Please feel free to visit their web page. Also, there are new children currently at Duke University having Cord blood Transplants. I would really encourage you to follow along with Julia's Transplant. Julia's mom has been gracious enough to keep a running journal of her journey through the transplant. Please visit Julia's Journey.
For more information about Cord Blood or Bone Marrow Transplants, please contact:
Duke University Medical Center
Durham, NC 27710
Joanne Kurtzberg, M.D.
Director, Pediatric Bone Marrow Transplant
Personal Office: (919) 684- 9863
Appointments: (919) 681-4253 or (919) 684-3401
Fax: (919) 681-8942
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