Baby Knox

In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.

Baby Knox, Painting

Healing Wind

The inspiration for this painting came from the lines from Richard Aldington’s poem: “O Death, Thou art an healing wind That blowest over white flowers…”   Once again, my friend found a large canvas in a dumpster. This is how it looked when he found it. It’s 24” x 48″. […]

Baby Knox

One Month Without Knox

There were  5 diapers left in his diaper basket. There were 28 medicine syringes left in the kitchen drawer. I have received 122 sympathy cards. And all the flowers have wilted. In the morning, I wake up and set things up as if he was still here.  I lay his […]

Baby Knox

One Week Without Knox

  It’s been one week since I buried my son. I’m trying to adjust to life without Knox and trying to make sense of the last 3 weeks. At this point, I feel as if I don’t care about anything.  It’s understandable, I think. If I live, fine. If I […]

Baby Knox

Knox Went to Heaven

  My baby is gone. My little Knox had been battling a double ear infection over the last month. None of the antibiotics worked. Then he caught a respiratory virus (RSV) on top of it all, and his body wasn’t strong enough. He spent the last 5 days of his […]

Baby Knox

Amy and Friends CS Retreat 2013

We traveled over to North Wales last week to attend our second Amy and Friends Annual Cockayne Syndrome Family Conference. My son, Knox, has a severe form of Cockayne Syndrome.  It’s a terminal condition that is causing him to age faster than normal.  Instead of growing, gaining weight, and reaching […]