My Niece (Jadalynn) Has a condition called Microlissencephaly... We're searching for answers

Arlene - posted on 03/19/2014 ( no moms have responded yet )

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My niece (Jadalynn) was diagnosed with Microlissencephaly at birth.
Her diagnosis was based on the following 3 observations:
Only the anterior fontanel was opened at birth, the rest were closed.
Half of her brain was smooth and her head circumference was 28cm at birth
Prognosis for her condition was:
Severe retardation
Seizures
Less than a 3% chance of being normal
Would possibly need a feeding tube
Regression from anything learned
High probability of death by her 2nd year of life

Jadalynn is now 6 years old. She has undergone physical, occupational and speech therapy sense birth. She can talk, walk, run and play with full functionality of her arms and legs. No seizures, paralysis, or other severe predetermined conditions have been observed sense birth. She has some developmental delays; she has difficulty speaking words clearly and learns at a slower pace than other children her age. However she does comprehend and respond positively when asked about things she knows and at times expresses interest to learn the things she doesn't. In addition, when interested in the subject her attention span can range from 10 to 15 minutes or longer.
Because of her prognosis and the fact that there is such little information about her condition known we have millions of questions and no one to ask. We are pleading to other moms with children or family members that have the same condition to contact us.
We are searching for teens, adults or anyone with any information who can provide some insight. My nieces case seems to be unique and in comparison we worry about her regressing or worst. My sister her mother, has tried reaching out to doctors who only speak about the negative straight out of a textbook.
Please help if you can...

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