It breaks my heart to know that Miss Lilie Clark passed away a few hours ago. I have been following her life (blog) for almost a year now and she finally earned her angel wings tonight. Through the help of Amber and many others, we were able to send Lilie and her family to Florida this past spring for a wonderful vacation, knowing it would be their last one with Lilie.
She was truly a fighter and will be missed dearly by her family. If you are reading this, please pray for healing for this family-their toughest days are yet to come. They are donating some of Lilie's organs for research on GM1 Gangliosidosis.
It is a rare, incurable lysosomal storage disease (enzyme deficiency) that has no cure and most children do not live to see their second birthday. Lilie surprised most of her doctors and lived a wonderful life with a family who loved her ever so dearly.
I hope you are finally able to run free around Heaven Miss Lilie-you are finally healed!