This day would turn out to be a devastating day for NY, the World, and for us personally.  Early in the morning there had been terrorist strikes in the US, The Twin Towers and The Pentagon had been hit and thousands of people were killed.  We would go through this day in a daze, nothing seemed real, we were in the middle of a terrible nightmare and hoping to wake up.

Later in the day we met with the pediatrician and explained that in the last 1/2 month you seemed to be doing less and less.  Other than the one time you rolled onto her side you did not try it again.  Also your neck seemed to be not as strong, making your head flop to the side a bit.  You would also lay on the floor very still for such long periods of time, until you were startled and then you would fling your arms in the air and your legs straight out (you would become so rigid that it was very difficult to get you to bend your arms or legs).  Unlike before, you no longer seemed interested in reaching or grabbing for your toys (you often held your hands in fists and your left thumb was now turned in).  We also noticed that your breathing could be quite raspy at times (cold-like symptoms with a runny nose), and in just the past couple of weeks you would cry just before breastfeeding (which was very unusual for you because you had always been a good feeder and had never had difficulty latching on).

For the most part though, you still seemed happy & content, you still smiled, giggled and laughed, it's just that you were so content to just lie there so still.  Again your daddy & I just attributed this to your relaxed, laid-back personality which we found so endearing.  You have always been such a keen observer, you love watching people and are always interested in things that are going on around you.  You watch your mommy's every move, no matter where I go or what I'm doing your beautiful eyes are on me and as long as I am in your field of vision you're okay.

After a physical, the pediatrician brought us back to his office to discuss what he was thinking.  He said that he would be referring us to see a Neurologist because he had a feeling that there seemed to be a malfunctioning of your brain and how messages were being transmitted to your extremities.  Although your daddy & I were a little scared we were certain that all that was needed was maybe some medication so that your brain could effectively send the required messages to your arms and legs to get them to move.

We met with the neurologist at the Children's Hospital and things would take a spiraling turn for the worse.  Without saying too much the neurologist said that she would like to have a CT Scan done of your brain and the fastest way to get the test done was to have you admitted into a hospital bed.  So later that morning they found you a bed... okay things were happening a little too fast now, wasn't it just yesterday that we were laughing and singing songs with you in our living room?  How did we end up here?

Your daddy & I still had no idea the seriousness of what was about to happen, we were thinking at worst that you may just have a developmental delay, that maybe you would be physically challenged in some way.  No matter, we could live with whatever we were told, we loved you and nothing could ever change that... you were and are the most amazing thing that has ever happened to either of us and whatever card we were dealt we'd play...  Never never never in a million years would we ever guess what nightmare was about to unfold...............

Once admitted they said that the CT Scan probably wouldn't happen until the next day unless we could get you to lay very very still, in that case they could do it at 1:00pm that afternoon without putting you under anesthetic.  Being as anxious as we were we decided to try getting it done without the anesthetic so we could have the test done sooner rather than later.  We knew that you could lay extremely still because that's just the way you were...relaxed.

While we waited for the technician to get the CT Scan ready, I was questioned by a resident Neurologist who asked about your symptoms over the past couple of months.  As she was examining you she was so overcome by you.  She said that you were so MESMERIZINGLY BEAUTIFUL, she couldn't believe how beautiful you were.  As she continued to examine you she just kept saying that she had never seen a baby as beautiful as you.   How blessed your daddy & I were to have you as a daughter, so perfect, so amazing.  Chloe, my darling little girl, WE LOVE YOU!

You being the angel that you are the CT Scan was successfully done while you laid there on the table, at first relaxed and eventually you drifted off to sleep... you are so amazing Chloe!  That afternoon the neurologist came with the CT Scan results and said that it showed an abnormal disturbance of the biochemical make-up in your brain.  What did this mean?  The neurologist was extremely vague and offered very little information or comfort, she just said matter of factly that there seems to be too much white matter in your brain and that they would like an MRI done the next day to get a more detailed picture of your brain.

The wonderful head nurse on our hospital ward told us that we could go home to have a restful sleep at home as long as we promised to be back first thing in the morning to occupy our bed.  Thank goodness, nothing is better than being at home.

7:15am -- I went into your room to wake you up as we needed to be back at the hospital by 8:00am.  I brought you to our bedroom at 6:00am to feed you as it would be the last feed prior to the anesthesia for the MRI to be done at 11:10am.  Normally you go right to my breast when you are being fed, you've always been a good eater.  But not this time... this time you lay on my lap and you looked up at me with those beautiful, mesmerizing eyes.  You looked for so long and so quietly, you looked so concerned, so thoughtful, so endearing.  I looked back down at you and I cried, you were the most beautiful being I'd ever seen.  I was so overcome with love for you and it was as if you were telling me everything was going to be okay.  If it weren't for you I don't think that these days would be bearable, you amaze me every minute of every day.

This day would be one of the most difficult days your daddy & I would ever have to face.  At 11:10am you were scheduled for an MRI, Lumbar Puncture, Spinal Tap, Skin Biopsy and Blood work.  For these tests to be performed they would need you to be anesthetised.  As is always the case the time for the tests kept getting bumped which meant that each hour that passed you became more overdue for feeding.  But wouldn't you know it, you were the perfect angel, never complaining, taking it all in stride.  I can learn a lot from you, if only more of us could be like you.

Anyway, the thought of you going under anesthesia was more than your daddy or I could bear, we each kissed you on the cheek, told you we loved you and we were asked to leave and not return for 40 minutes while they performed the tests.  Your daddy & I went for a walk along Oak Street to get some fresh air and in the backs of our minds we tried so hard not to think about what you were going through.  I was so afraid that you would never wake up....

After 40 minutes we went to the waiting room to wait for the nurses to bring us to you.  40 minutes went by... 50 minutes... 1 hour... where are the nurses... what is going on... has something gone wrong?   1 hour and 15 minutes later I was certain something was wrong so I went to the receptionist and asked if you were okay and if I could see you yet and why it was taking so long.  She explained that some children take longer to wake up than others but that you would be fine and it shouldn't be much longer.

1 hour 20 minutes... finally the nurses came and told me that I could come and see you again.  I ran all the way there, I could hear you crying from down the hall, why had they waited so long to get me, why did they have to wait until you cried, my poor little angel.  I ran and picked you up and hugged you so hard, my poor little baby, so scared and so hungry.  I tried to feed you but you were so upset that it would take awhile for me to calm you down.

The results of the MRI came back and the neurologist said that they are conclusive with the CT Scan, there is something not right with the biochemical make-up of your brain.  The white and gray matter in your brain is not differentiated in a normal pattern.  The lumbar puncture results also came back showing that there was too much protein in your spine.

Your daddy and I picked up a very ominous vibe from the neurologist and we were just beginning to realize that the physicians were looking into some very serious diagnoses for you.  Immediately I called your Auntie Sandi.  I needed her there with me.  She is not only my sister but she is my dearest friend and I wanted her there with me when the doctors came back.  You see, your Auntie Sandi is a nurse and I knew that what was about to come would be too much information for me to handle emotionally and physically.

Within the hour your Auntie Sandi and Uncle Andrew arrived.  It was so great to have them there for support.  Somehow it just feels like if you have buffers of support around you that you can't get hurt... not true.

At 3:00pm a Biochemical Diseases physician came to talk with us about what they were looking into.  They were looking into a group of diseases that are extremely rare genetic diseases.  The category of diseases they were looking at had 10 diseases each of which had varying degrees of severity.  The physician did not wish to go into descriptive detail of each of the 10 until they could narrow it down as he felt it would be too overwhelming for your daddy & I.  He said that it meant that your daddy & I had the recessive gene for the disease and the chances of each parent having the recessive gene was extremely rare, about 1 in 250,000 chance.  He also said that there was a 1 in 4 chance that any other offspring would have the same disease.

I ran away, sobbing, thru the halls, past room after room, where is there some fresh air in this place... out the doors and onto the rooftop patio... I can't believe this... what is happening to my perfect life... my perfect baby... she was so healthy... why now? why you?  why me?...why your daddy again (he had already lost a brother - how can it happen all over again to his family?)... what now?... it's a mistake... it has to be... they're still not sure, right?...there's still a chance... right?????

They sent another neurologist to come and talk with us as no one had yet gone over the test results in detail.  They took us to a little closed in room (I'm sure because they didn't want me to disturb the other patients with my crying outbursts).  The neurologist was very soft-spoken, nice and thorough as she showed us the pictures of your brain.  She explained that you did not have the enzyme required to produce myelin, causing a build up of protein which just keeps building up and building up.  She believes that you have an extremely rare form of a disease called "Leukodystrophy" and that there are varying degrees of degeneration of the disease.  She doesn't want to say which of the leukodystrophies they think you have because they aren't absolutely certain yet and if they tell us one thing it could very well be another and they don't want us to be upset about something unless there is reason.

You were released from the hospital as there were no further tests to be performed at that time.  It was then just a matter of waiting for the outstanding test results to confirm a diagnosis.  Although we were elated to be taking you back home, away from the hospital (paradoxically, hospitals are no place for the ill), we were scared of what was to come, the unknown.  Your daddy & I took out some textbooks from the medical library at UBC because we wanted to know exactly what this "leukodystrophy" was and what form we thought you might have as the doctors continued to be predictably elusive.

Why did we take out those books?  Maybe if we hadn't taken them out we could pretend nothing was wrong...couldn't we?????  Those horrible, dreadful books...under each of the 10 leukodystrophies, under the heading "Course of Disease...death...death...death".  Not one of the leukodystrophies ended any other way and not only was the prognosis death, but none of them had a life expectancy past 3 years.  What is going on?  How can this possibly be?  What did we ever do to deserve this?  What did such a sweet, innocent child do to deserve this?  NO!  This is not happening, everything is going to turn out okay.  We'll just go back to the doctors and they'll tell us there's been a terrible mistake and the test results are fine, Chloe is fine.

In total dismay, your daddy rode his bicycle back to the hospital the next morning to straighten out the misunderstanding.  Your daddy ran into the Resident Neurologist and he asked her, "Is there hope for Chloe?" ----- Answer, "No, I'm afraid not, we believe it's Krabbe's Leukodystrophy".  Stunned your poor daddy stood there in disbelief, what had she just said?  As he recalled, Krabbe's was the worst of all of the leukodystrophies, not just "death" but "rapid death", usually within 1 - 2 years!!!!!!!

Your daddy came back home, tears streaming down his sad, sad face.  "What is it?  What's wrong?", I asked.  "It's not good..." your daddy replied.  We sat there clinging to you, hugging you so tight, it was going to be okay, we'd figure something out, with medical advances of today there had to be something they could do, we were certain of it.  That night your daddy talked to his cousin and between them they recalled a movie that had come out a few years back about a similar neurologic disease of a young boy, "Lorenzo's Oil".  That night your daddy & I started to watch the movie and at the very beginning there was information on the "Myelin Project", an organization responsible for finding a way to produce the much-needed myelin of children suffering from the devastating affects of the leukodystrophies.

Immediately your daddy rode his bike down to Uncle Brian & Auntie Jess's to use their computer as ours had just recently malfunctioned.  It wasn't short of an hour that your daddy showed up back at our home with a sparkle back in his eyes.  He was out of breath and held up some papers in the air, there's a cure!!!!!!!!!!  What had he just said?  A cure, really?!?!   Let's get going, what is it?  Where do we get it?  Let's go now.  Your daddy had found a treatment down in North Carolina, at Duke University.  The treatment was called a "Stem Cell Transplant" using the umbilical cord blood of a healthy newborn.

Your elated daddy immediately called the Duke University phone number and he was patched through to the Director of the Program, Dr. Joanne Kurtzberg.  I still to this day find it amazing that your daddy was immediately put through to the doctor, without hesitation.  Never had we experienced such courteousness or expediency within our own schmozzle of a medical system.  Dr. Kurtzberg proved to be a remarkable human being, if only for her concern and accessibility.  She said that based on the information your daddy had given to her about your present condition, she could do the transplant immediately.  All that was needed was for our doctors to forward a copy of your MRI to her so that she could assess the damage and proceed with transplantation.

Chloe, I wanted to tell you about your mommy's friends.  Since elementary school I have been fortunate enough to have the most remarkable friends you could imagine.  After all of these years we have managed to stay in touch and even if it's only once a month or maybe two before we get together again, when we do get together it is as if no time has elapsed & that my darling is true friendship . I honestly don't know how I would have made it through some of these days without the love and support of friends and family.   They are there to laugh with, play with and cry with.

Anyway, on September 21st your mommy's friends arrived at the door with hugs, kisses and prayers.  If we aren't able to heal you medically, there has to be healing power to the LOVE that surrounds you my little sweetheart.  Let's just hope that LOVE is enough, it has to be.

Chloe, there are so many peole who are thinking about you, praying for you, and loving you every day.  We are so thankful to have so many wonderful people in our lives.  Among our friends, your mommy is also so touched by how wonderful and supportive her work and housing co-op have been. I have not been able to return to work after being on maternity leave for obvious reasons but your mommy's wonderful co-workers have been such a comfort and support and are doing everything possible to make sure we are doing okay.  Just as the housing co-op we are proud to call our home has come together to join our community together with love.   Thank you.

Chloe, I wanted to tell you about the amazing family you are part of.  You have so many wonderful, caring great-grams, grammies, grampas, great aunts & great uncles, aunts & uncles, cousins and a mommy and daddy who absolutely ADORE you.  And the best part about being in our family is that we have a lot of FUN, LAUGH a lot, and really CARE about one another.  Without the LOVE and endearing qualities of our family the days to follow would be unbearable.  Although they don't believe us when we tell them we draw strength from them it couldn't be more true.  They think they don't know the right thing to say or do, but you know they do exactly what we need them to do, LOVE US with everything they have and there is nothing greater.  Thank you.