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                                             THE SEARCH FOR A DIAGNOSIS

From the very beginning when we knew there was a problem with Lauren, we were keen to obtain a formal diagnosis. We encouraged our doctors to do whatever tests were necessary to help unravel this mystery. Sometimes along the way we became frustrated due to the lack of progress and reluctance by some doctors to authorise certain diagnostic investigations. In 1998 we sent Lauren's medical information, MRI's and CT scans to the United Leukodystrophy Foundation in the United States for review in their Second Opinion Program.    http://www.ulf.org/

We were relieved to eventually receive a response. We did not obtain a diagnosis, but the information received ruled out certain types of Leukodystrophy and threw light on other possible conditions. The ULF does an outstanding job serving those affected by Leukodystrophy by researching treatment and cures for this dreadful disease and providing information and support. We followed up on the recommendations of the ULF. All tests proved negative, we still remained without a name for Lauren's condition. 

Three years later we decided to make contact with Dr. Marjo van der Knaap, who specialises in undiagnosed white matter disorders. She is a delightful lady who willingly agreed to review Lauren's medical data. It was very refreshing to deal with someone who was so enthusiastic and thorough. Within days of receiving the information about Lauren we had a response. No diagnosis but confirmation that everything that could be done to obtain a diagnosis has been done given our present level of medical and scientific knowledge. We hope that some day in the near future breakthroughs will occur which will help to resolve this uncertainty and provide the diagnosis.

Knowing that we may not obtain a diagnosis while Lauren was alive we had made arrangements for an autopsy to be performed in the event of Lauren passing away. We were very relieved to see this happen at the time of her death. In addition to this additional tests were arranged prior to her passing which may also assist in trying to obtain a formal diagnosis for her condition. We feel comforted having done this knowing that we have left no stone unturned in the quest to obtain a diagnosis. At this stage it is too soon to know the results of these tests.