The Diagnosis

8 Dec

On Friday December 2nd Stephen and I headed to the Montreal Children’s Hospital, we were about to officially find out the name of Lauren’s disease. My adrenaline was pumping, for weeks I had been reading up on different forms of Leukodystrophy. I had my suspicions, but still hoped that there was some mistake made – a misunderstanding that would allow for a cure.

As we sat down with the Neurologist it was clear that no mistakes had been made, Lauren had been diagnosed with Krabbe Disease. Stephen and I had fully expected to hear this but it still brought a flood of tears to my eyes, this was really happening.

The rest of the visit went by in a haze, we discussed what we would need to think about and consider over the next few months. Some items on the list were easy to bear, like changing Lauren’s NG Tube to a G-tube (feeding directly into the stomach), while other items were far more complicated. It became clear tough decisions would need to be made as the disease progresses and Lauren’s quality of life deteriorates.

Our journey with Lauren and her disease has only begun, and the road ahead terrifies us. We have no control or ability to fight this, the disease will take it’s course and we will have to endure the struggle while savouring the precious moments.

We will cherish the time left with Lauren, appreciating every coo and smile. We will live in the moment, taking it all in one day, one hour, one minute at a time.

Lauren Sleeping

Lauren enjoying a well deserved nap


5 Responses to “The Diagnosis”

  1. ann morfitt December 8, 2011 at 11:55 AM #

    Dear Amanda and Stephen,

    I am so sorry that they have not made a mistake. I believe there are a lot more people with krabbe than alexander so this would mean there is more research already done in the krabbe area. When Banting discovered that injections of insulin would save people who had diabetes, there were a lot who had thought there was no cure and that they were doomed. They woke up to this miracle treatment that has saved and does save millions daily. Banting, as a farmboy in Alliston, Ontario, grew up learning about sickness from his farmer dad who always examined why an animal was sick. So a simple boy learned from his simple dad to simply save millions. Banting had lost a good friend, a girl, age l3, to diabetes and that day he resolved to find a cure for diabetes. He found a treatment and the lamp still burns at the university (London) where he graduated in medicine. It will be snuffed out when a cure is found. It only takes one creative man/woman/researcher to find/discover a treatment/cure. Let’s hope there’s another Banting in a lab at this moment studying Krabbe’s disease.

    I can’t begin to imagine how terrified you both were with the final diagnosis and then having to absorb all that information on the future care of your beautiful precious Lauren. She looks so content and loved.
    God has chosen two of the finest to care for His best.

    Ann xo

  2. shannon December 8, 2011 at 12:22 PM #

    Thoughts and prayers…and much love. Shan

  3. Janet Loughheed December 9, 2011 at 3:09 PM #

    My thoughts are turning to you often, and I pray for all of you each day.

    I was talking to Dad (Crossley) the other day about their first two boys that died shortly after birth. It is the first time in 48 years he has ever talked about it with me. Dear Lauren is touching all of us, helping God with healing some very old wounds. She is a gift and a treasure.

    I know that the future is dark but hold onto love and there will be light.

    Aunt Janet

  4. Jodie Metsos January 3, 2012 at 3:39 AM #

    Dear Amanda & Stephen,
    My prayers are with you both and your beautiful little girl.
    God Bless you all,
    Jodie Metsos

  5. Royce Shufford January 3, 2012 at 11:04 AM #

    I really like your writing style, superb information, appreciate it for posting : D.

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