Back when Lily was 1st diagnosed with IS, I found the Infantile Spasms Yahoo Group and of course immediately joined and read all of the posts, every day. I learned so much from this group, and continue to learn from them even now. There is a group of 8-10 families that have kids around the same age as Lily, who all joined the group around the same time, and many still battle seizures & disability today. I follow their blogs, email with the mothers, and consider them part of my, and Lily's, IS Family.
And Monday we lost a beloved member of our family. Jordan Rowe, a gorgeous girl with eyes that won't quit, and hair the color of the sun passed away unexpectedly in her sleep.
Her mother, Leslie, is the most amazing advocate for her children, Jordan especially. She never slowed down searching for answers, pushing for resources, and standing up for her daughter. I learned much from her, about advocating, not accepting the "we don't know" answers.
From the Rowe Family Blog
Jordan didn't wake up this morning. She passed peacefully in her sleep sometime between midnight & 04:30am. She was right there with us, yet made no plea for help, no gasps for breath, no cries of pain. She just slipped away. Quite unexpectedly. She was almost back to "normal" from her illness of the last few weeks, and was going to go to school today for the first time in over a week. Unfortunately for us, though, it was her time to go. We are shocked and devastated. Devastated. We will let you know when arrangements have been made for her memorial service.
Leslie, Devon, Avery, & Birkeley
My heart aches for the loss of Dear Jordan. Jordan was Lily's IS Sister, and she will always be in my heart.