3rd and Last day of ALD conference. Finally I learned something I did not know before about Sammy's condition. Child X-linked ALD comes in 2 forms. Only 15% of cases are neurologically challenged. Sammy also has kind that has inflammatory effect on the brain.
Remarkably his MRI was revived by 2 TOP specialist for ALD-Marjo van der Knaap ,MD,PhD from University Hospital Amsterdam,Netherlands and our remarkable Lawrence Charnas,MD,PhD from University of Minnesota who is specialist in ALD after Bone Marrow Transplant MRI. Both Doctors was impossible to meet otherwise,they are in extensive research for cure of child cerebral ALD/Sammy's' case/and AMN-adult form of ALD/no known cure or treatment yet/ We got pretty much the same answer,that we did everything possible and our program for recovery is on the right track. We also received a pleasant remark regarding Sammy's continues recovery even know that last MRI was not as we expected.That fact that this boy can show improvement in some areas now ,that was lost before transplant do to neurological deterioration,was great. Doctors have not seen many cases of improvement or regain of lost functions. We will continue aggressive Rehab and non-stop activities-the sky is the limit! Possible visit to Minnesota in 7 month?
We will make miracle recovery ! We will be happy with basic line recovery and anything extra will be a gravy! Sammy will only hear encouragement -No tears is allowed,no weakness zone!
With help of this unique Doctors and our own team- Pediatrician Dr G.Levin and our stem cell unit staff & Dr Duerst and very best Neurologist Dr Swisher and endocrinologist Dr Zimmerman,from Children's Memorial- will get this boy up and going in no time. We trust this professionals with our child life. Thank you , Sincerely Zeltser's
Saturday, July 19, 2008
On the right track
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2 comments:
happy to hear your update! may hashem speed up the recovery and may you have lots of yideshe nachas from all of your children! amen!
i am an avid reader of your blog
u r on the right track leading to truth fulfillment happiness and spiritual service. many of us r so busy trying to keep our balance on the winding tracks leading to no where. there will be light lots of awesome light and the end of the tunnel. it always seems that when g-d throws a loop a curve, we r almost at the finish line, u r almost there, get ready to claim your precious meddalion, that is nachas from sammy and your beautiful family and dear husband.
go chana go go go!!!
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