Generous Girl

  Many times as I encounter (or Sophia encounters and makes) another friend, they often declare how she has touched their soul and I'm reminded of the miracle in Sophia's giving heart. Our "new" friend will quickly tell me how lovely and amazing she is and how she gives her all, in all, she does. I smile and rejoice with them and tell them, "that truly is her gift. She is a miracle and a generous being, always! She touches our family, each and every day, in the same way."

  When friends, (new or old) want to learn more about Wolf-Hirschhorn Syndrome, I extend this website, wolfhirschhorn.org (like our geneticist counselor shared with us) to give understanding and a full picture of what it means to live with WHS . I remember, distinctly, our counselor suggesting we visit THIS website, FIRST, before we navigate anywhere else on-line. She said, "It's the most real and comforting website, they have found, in regards to gaining understanding (with others) in sharing our newly given diagnosis."
I'm so glad I trusted her and when I found the site and when I pushed the "Home" tab (three years ago) I knew...I was home! The banner of attributes were all to familiar and so were the children's faces.  Just like my Sophia.

  I'm always comforted by the banner of attributes and pictures of our children, that runs along the top of the page, when I come "home" to the website.  I identify as I've known my daughter, Sophia, attending life with Wolf-Hirschhorn Syndrome. I'm thankful to know and adore many people, here, now.  We can add many, many more, to the banner of attributes because living with our children's wealth is immeasurable compared to their living without some genes.

  Since then, the acronym, WHS has come to mean... We Have Story (with heart and soul) more than it means Wolf-Hirschhorn Syndrome (without a part (deletion) of the short arm of chromosome 4.)

  Here's another part of Sophia's story, offering another attribute in a picture mosaic, freely being a generous girl!

GENEROSITY...Freely giving to those around them, an overflowing joy welling up, deep within them and even out of their most difficult trial.