Kristen, Director of Development for Smith-Kingsmore Syndrome Foundation, and a mom in the US, writes the blog on this site. After 15 years of questions and no answers, her son Jack finally got a diagnosis of Smith-Kingsmore syndrome. She writes this blog to help special needs families know they are not alone.
Please also check out Patsy’s blog. Patsy is a mom living in the UK. Her son Archie was also diagnosed with Smith-Kingsmore syndrome after years of not knowing. Patsy started sharing about their journey back in 2011, and writes about her family’s struggles and triumphs.
Nazira is another mom living in the US, and Vice President of the Board of Smith-Kingsmore Syndrome Foundation. Nazira writes the Beautiful Journey, a blog about her amazing family, and the boy who teaches her every day what it is to be a fighter, a warrior, to be brave and to persevere.
Family Support Blog - Smith-Kingsmore Syndrome
The Ripple Effect
Events can take on a life of their own…though not always on our timetable Do you ever feel those days where you can’t get outside of your head? The days you are dragging, going
I Want To Live My Life The Way I Wear My Hair
A comfort zone is a beautiful place but nothing ever grows there. Unknown A woman who cuts her hair is about to change her life. Coco Chanel You have such pretty hair. Don’t ever
The Paradox of “This too shall pass.”
Like everything else–it’s complicated. Life isn’t fair, yet my limited teenage experiences told me otherwise. Sheltered by my upper middle class upbringing, I would engage in some magical thinking, borne from the luck of
The Movie Of Our Lives
What story will you tell? One day a while back, I was in my car getting my NPR “Fresh Air” fix. Terry Gross had been interviewing someone whose name I can’t even recall, but
Free Soloing the Mountain of Caregiving
“I’ve done a lot of thinking about fear. For me the crucial question is not how to climb without fear-that’s impossible- but how to deal with it when it creeps into your nerve endings.”
The Battle Between Control and Acceptance
It’s an ongoing tension. The Serenity Prayer God grant me the serenityto accept the things I cannot change;courage to change the things I can;and wisdom to know the difference. Mike and I love to problem
