THE
STORY BEHIND THE STORY
Another story has been unfolding behind
everything that has been happening to Lauren. We wanted to have another child but we weren't
prepared to take the risk and conceive another child with Lauren's problems. A number
of doctors have said they suspect Lauren's condition is autosomal recessive
and there could be a one in four chance of having a child with the same condition. We
decided to use IVF technology with the use of donor sperm to avoid any chance of repeating
what we have been through with Lauren.
After three long years of hope, anguish and frustration we
were finally successful in achieving our goal. Carolyn fell pregnant and our precious
baby boy, Daniel was born on 24th. May, 2002. He is healthy and well, very alert and active.
He is giving us much pleasure and is adding a new perspective to our lives. Lauren is
getting aquainted with her new baby brother and appears to enjoy his company.
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. The results of the additional tests and the autopsy were unable to confirm a diagnosis.
