I am sad today. Heartbroken. I haven’t written here for a while, mostly because I didn’t have anything extremely important to say. I’ve shared my views on breastfeeding, I’ve vented, I’ve rambled. I’ve meant to continue my cloth diaper posts, but in the day to day shuffle, I either don’t have the time or the words. Today, I have something to say. It may not make sense, it may not be extremely eloquent, but I want to honor someone. She is an amazing little girl named Anaya. As I write this, my beautiful little man is sleeping next to me peacefully. And somewhere in British Columbia, Canada, a loving, amazing family is saying goodbye to their beautiful baby girl and baby sister. Anaya was born in August of 2009. By February of 2010, her Mama had noticed she was having trouble swallowing while she nursed. In May of 2010, she was diagnosed with Krabbe leukodystrophy. For most, this diagnosis is a death sentence. Most children do not make it to their second birthday. Her family refused to give up hope, refused to give up their time with their precious little girl. They celebrated her second birthday this past August. Instead of focusing on their sadness, they have given themselves heart and soul to their little girl and her older sister, as well as devoting themselves to campaigning for better newborn screenings, which could save lives. I am in awe of this family, of their journey, and most of all, of Anaya. Today, they have made the decision to take her off of life support, and allow her to go, if she is ready. I grieve for them, and I wish them all peace.
Read her incredible story at www.healinganaya.com
Taken from www.huntershope.org
Signs & Symptoms (Infantile)
Symptoms usually begin at two to six months of age. The average age of death is 13 months.
General irritability (excessive crying), stiffness, arrest of motor and mental development, loss of previously attained milestones, difficulty in feeding, and seizures.
Many babies in Stage One Krabbe Disease are misdiagnosed with colic, reflux, food/milk allergy, or even cerebral palsy.
Children may have severe arching of the back, jerking of the arms and/or legs, more severe and rapid deterioration of mental and motor function, generally fed through a tube.
Children lose mental and motor function, become deaf and blind, unable to move or speak.
Later onset Krabbe Disease, while less common, delays the onset of neurological symptoms until middle childhood, adolescence or adulthood.