This is Dani. She died from complications of epilepsy on March 10th, in her parents' arms.
This is Cyndimae. She died of SUDEP (Sudden Unexplained Death in Epilepsy Patients) yesterday while napping on her father's chest after a normal day.
I don't even know what to say other than to bring these beautiful children to your attention, to ask you to bow your heads and send all your loving juju to their families. I know them all through this bizarre and wonderful community of people struggling with seizure disorders, cannabis and the fight for access. I've looked at their pictures, followed their ups and downs and spoken with their mothers over the years. These children are our children. Cyndimae, Dani and Oliver are our lights, even if extinguished.
So saddened by the loss of these beautiful children. Thank you for saying their names. I cannot even fathom what their families must be going through.
ReplyDeleteI'm so sorry.
ReplyDeleteSaddens me to the depth of my soul. Thank you for this post...
ReplyDeleteEveryone's worst fear, to lose their child. I'm so sorry.
ReplyDeleteTheir lights shine on in your heart, in our hearts, but oh! - how I wish they were still here for their parents and families to hug and hold! It hurts to know that this has happened to these dear families, and I send much love-energy to them. And to you, a valiant-hearted activist and friend.
ReplyDeleteThese children gave us so much hope. They're lives are precious to me. Heartbroken doesn't even cover how I've been feeling this week. Thank you thank you for this post. I wish I could send it to the first doctor who told me not to worry because seizures won't kill my son.
ReplyDeleteI'm so sorry about these precious children. It does just break my heart. I send love to their families and to you my dear friend.
ReplyDeleteBowing my head and sending so much love. So much.
ReplyDeleteAs I think I've told you, our former Notting Hill neighbors Chris and Linda lost their daughter to SUDEP about eight years ago. Such a sudden, cruel tragedy!
ReplyDeleteThis is heart wrenching...Thank you for putting beautiful faces and names out here and my love to all of their families and to you.
ReplyDeleteThank you for telling us, Elizabeth, for bringing their names and lives to us. I will hold these children and their families with me today.
ReplyDeleteThank you for bearing witness to these children and the families that loved them. Love you, Elizabeth. x0 N2
ReplyDeleteGreat compassion and loving kindness to these children, however brief their lives, and to their families. And love to you, dear Elizabeth. Great love to you.
ReplyDelete~Beth
Great compassion and loving kindness to these children, however brief their lives, and to their families. And love to you, dear Elizabeth. Great love to you.
ReplyDelete~Beth
So very sad. My sincere condolences. Sending love.
ReplyDelete