Lovely Little Lauren

I've posted before (here and here) about Amanda and Stephen Loughheed and their lovely daughter, Lauren Olivia.  Or, adorably, LOL for short. 

Amanda went to the same high school as Kelly-Anne and me.  She and her husband gave birth to Lauren in January 2011.  The first 8 months of Lauren's life were perfectly normal.  She hit (exceeded, even) her developmental milestones and laughed, cried, and babbled like every other baby. 

Last fall, however, Amanda and Stephen began to feel something had gone horribly wrong in Lauren's development. Suddenly she could no longer sit up on her own and was frequently irritable.  

After a grueling battery of tests at Montreal Children's hospital, Lauren was diagnosed with Krabbe Leukodystrophy.  A fatal disease for which there is no cure.  Krabbe is a cruel, cruel illness.  It robs its victims of their ability to see, their ability to eat, their ability to walk or move normally, their ability to smile, and their ability to hear.  It often claims its victims before age two.  

How does one go on after such a devastating diagnosis?  That's the question I asked myself after hearing that little Lauren had been diagnosed with Krabbe disease.  I worried about my friend and wondered how she would cope with caring for her daughter as she slowly slips away. I prayed for the entire family as they came to terms with this diagnosis.  

This weekend I had the pleasure of visiting with Amanda and Steve and their beautiful daughter.  It's impossible to convey just how proud I was of them.  They are handling this situation with a grace and peace that exceeds all understanding.  I know they have their hard days, but Amanda has truly risen to the occasion. 

Lauren is an absolutely beautiful child. She radiates peace and is being extremely well cared for.  Amanda has reorganized her entire life to ensure Lauren gets top notch care and can still have as many experiences as possible.  Most importantly, she advocates for her daughter, learning about the latest treatments and insisting that Lauren be given a chance to live what's left of her life without being pumped full of morphine.  

I'm so proud of Amanda.  She is going through the most difficult trial imaginable, yet she is peaceful and even serene.  She has immersed herself in a world she never could have imagined--a world of medical tests, feeding tubes, palliative care, and end of life decisions.  Yet she doesn't complain.  

She simply tries to put one foot in front of the other and get on with living.  She tries to love Lauren and make sure she is as comfortable as possible.  And she prepares for the inevitable.  Trials bring out qualities we didn't even know we had.  Sometimes they break us.  But sometimes--and I think this is the case for Amanda--they shape us into a person we wouldn't have even recognized.

Please keep Amanda, Steve, and Lauren in your prayers.  And if you can think of some way to help this precious family, please don't be shy.  They deserve our support.