Dearestest

Hey darlinks,
Caro reminded me that i haven't written in here in a while so i thought i would, cause i also have some stuff on my mind.
I went out with Bec today - we went shopping and then to dinner with our friend Bonny from CTHS.

But, that's not what i want to write about. I want to let you all know about something, and the reason I am going into teaching kids with special needs, and why i am willing to do anything to get into that course.
The reason why, is for a young girl who's name is Ella, and indeed her whole family. Ella suffers from Cornelia de Lange syndrome (CdLS).

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 some other syndromes, individuals with CdLS strongly resemble one another. Common characteristics include: low birth weight (usually, but not always, under five pounds), delayed 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.

Ella's family are great friends of mine, and they are very dear to me. They are not at all sad that they have Ella as their daughter and love her just as our parents love us.
Some of you may have seen her story in the sydney morning herald (http://www.smh.com.au/news/National/Some-help-when-sisters-cant-do-it-all-themselves/2004/11/11/1100131137147.html) if you haven't. You may have to register.. but to escape i think you can go to.... http://www.smh.com.au/news/national/ and then look for the heading "Some sisters can't do it all themselves" and read that. and that's ella and her sister Chelsea who is a kick but flute player. :) (her mum used to teach me).

Wear a green ribbon guys, and support those families with CdLS members! Give them a hope.

Jen
XXX