Maggi Blair - News & Updates

Hi! My name is Maggi Blair. I was born with CRANIOSYNOSTOSIS and was diagnosed at 14 months old with TRISOMY 9 MOISAIC SYNDROME. Today I am saying "mama" and have 7 teeth, with the 8th one coming in. I weigh almost 18lbs and am 28" long! Wow!

Wednesday, July 26, 2006

Maggi Diagnosed with Trisomy 9 Moisaic Syndrome


We attended Genetic Counseling at the end of May and discussed Maggi's diagnosis. Maggi's Chromosome 9 tripled itself during the seperation of cells during conception...there are 16% of 300 cells that carry the triple Chromosome 9. This is what we have been waiting for...the answer to the big picture of small tiny pieces of sicknesses.

Trisomy 9 Moisaic Syndrome typically means short life expectancy, however, Maggi is the first with the lowest percentage of 16, which means we can't determine how long she will live...we just know she is 84% NORMAL! There are many symptoms of this, so I have included a web link:

Please keep Maggi in your prayers. We have been trying to get her casted for her back braces she'll wear for one year to maintain the scoliosis and insurance has not cooperated too well. We are on a two week wait, at least for now. Also, Maggi is expected to walk, but we don't know when. A seating system will be designed and fitted for her with the back brace, so pray that insurance goes through on those items, too.

I will discuss in further detail later on Maggi's Genetic findings of her Trisomy 9 features.

We love you all and wish we had better news. We assure you Maggi is a fighter and has cut her 8th and 9th teeth this weekend! She is saying "MAMA" like crazy and flipping around the floor...rolling over completely is next~

We love you all,
Donna

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