Owen loves to help make the bed. Or, more precisely, he likes to play with the sheets. We wanted natural looking, fun images – so that’s how we started out our photo session.
His grin is the best.
And when his parent’s arms needed a break, we took time for some cuddles.
This next image sums up the relationship between Owen and his dad – they are big fans of each other.
Love Owen’s dark eyes against the white sheets.
Owen has recently been diagnosed with PURA Syndrome. It is a mutation of the gene on chromosome 5, which is key in brain development. Research continues, but this mutation of the PURA gene results in specific health and developmental issues. Owen has had significant delays since birth, but the family has never known the cause of the issues. They’ve just worked extremely hard to get him the help he needs.
Only 50 children worldwide have only been diagnosed so far, since this discovery is just over a year old. It has been extremely comforting to Owen’s parents to find other families that have some of these traits in common.
One trait of Owen’s that has always been clear is that this kid is extremely loving. He gives hugs and kisses – and I love his grip on Mom’s hair.
Owen learned to walk at the age four, and now, at the age of 8, he’s been mastering the stairs.
My favorite part of this image is his hand on Dad’s arm.
When it was time to break for lunch, Owen was right there in the kitchen with Mom. I love photographing in kitchens because so much of the family life revolves around that kitchen counter. These kinds of images also document his height and age. It won’t be long until he can confidently reach into that second shelf in the refrigerator!
“What children take from us, they give… We become people who feel more deeply, question more deeply, hurt more deeply, and love more deeply.” – Sonia Taitz
Please take a minute to read a bit more about PURA Syndrome:
Some of the PURA family: (Owen’s feature is on the bottom)