Little Boy Blue

Heidi is a sweet blogging friend. She always comments and is very friendly and positive. She has two sons, one of which, Little Boy Blue, has Cornelia de Lange Syndrome. I had never heard of CdLS before I started reading about Blue, and coming up this week on May 9th it is CdLS Awareness Day. So Heidi has asked her blogging friends to help spread the word about CdLS.

You can find any information you need about CdLS at the Cornelia de Lange Syndrome Foundation website (the following is from that site). You can also read about Little Boy Blue at Heidi's blog. He's a sweetie and he'll melt your heart! If you would like to help Heidi inform others about CdLS, read about her contest. And now, some of the CdLS basics...

CdLS is a congenital syndrome, meaning it is present from birth. Most of the signs and symptoms may be recognized at birth or shortly thereafter. A child need not demonstrate each and every sign or symptom for the diagnosis to be made.

As with other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include: low birthweight (often under five pounds), slow growth and small stature, and small head size (microcephaly). Typical facial features include thin eyebrows which frequently meet at midline (synophrys), long eyelashes, short upturned nose and thin, downturned lips.

Other frequent findings include excessive body hair (hirsutism), small hands and feet, partial joining of the second and third toes, incurved fifth fingers, gastroesophageal reflux, seizures, heart defects, cleft palate, bowel abnormalities, feeding difficulties, and developmental delay. Limb differences, including missing limbs or portions of limbs, usually fingers, hands or forearms, are also found in some individuals.