Who am I ...?
Jinn was born on Fevruary 24, 1987, a chilly day in Anchorage,
Alaska. When Jinn was 14 years old she is 50.5" tall (127.7 Cm), weigh 60 pounds
(27kg), a little
small for her age. She has long hair, long eye lashes, and tiny eyes,
small hands and feet, her entire body is very small. At age 18 years old, she is 4'2" tall and weigh is 60 pound and taking Joloft 25mg every day.
Jinn has a syndrome called Cornelia de Lange Syndrome, nameed
after doctor who discovered it. We don't know what causes this syndrome yet. It is very rare. Approximately one
in 10,000 - 30,000. They have one thing is common, that is, it does not
matter where they live, they are all alike, almost like brothers and sisters.
1st
birthday with cousin
Jinn go to school every day 7:00AM to 2:45PM. The school
bus come by our house to pick her up at 6:40am and drop her off at 2:45pm.
Of cause she need a little help to riding the school bus. Her
mom helps her get ready for school, to wash, brush her teeth, dress and eat
breakfast..
hospital at Portland 3rd
bithday
Jinn doesn't have friends yet but her brother play with
Jinn and sometimes her cousins come over and play together. They are 5 and
7years old.
Jinn like to go shopping and eat out, not restaurant, fast food. She like french fries and coke, and ice cream. She can not
talk yet but she know how to get what she want. She doesn't understand
what we are saying but she know a lot somehow.
backyard
CdLS = Cornelia de Lange Syndrome
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What is Syndrome ? What is CdLS ?
"Syndrome" is a medical term for a condition in which there is a collection
of signs (observable body changes) and symptoms (problems observed by the
patient) recognizable by a doctor's exam. Individuals with a syndrome may not
have all of its associated signs and symptoms, but they must have enough to be
considered "diagnostic." Conversely, because someone may display some of the
signs and symptoms of a syndrome, does not necessarily mean they have it.
In 1933, Dr. Cornelia de Lange, a Dutch pediatrician, described two children
with similar features, one 17 months and the other 6 months, who were admitted
within weeks of each other to Emma Children's Hospital. The first child had
pneumonia. Her first year of life had been characterized by a lot of feeding
difficulties and she was very small for her age, with a proportionately smaller
head circumference.
Other unusual facial characteristics were noted by Dr. de Lange. Soon after
this child was discharged, a second little girl was admitted. Not only did they
have common medical problems, but their resemblance to each other was
remarkable. In each case the doctor described what she observed with great care
and detail.
Professor de Lange followed her own advice: "Observe closely first." Nowhere
was the puzzled physician able to find a similar patient described in medical
literature. Cornelia de Lange is now generally credited with describing the
collection of symptoms comprising the syndrome that bears her name.
The syndrome is sometimes referred to as Brachmann-de-Lange Syndrome after
Dr. W. Brachmann, who described a similar patient in 1916. Dr. de Lange may have
overlooked his report because he concentrated on characteristics of the upper
limbs and wrote on the facial symptoms less specifically. (copy from cdls foundation website)
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