my name is Desiree and im a young mom of 12 month old baby Cody,
my LO has an extremely rare and scary genetic disorder called a "Leukodystrophy" I might even be the only one here because its so rare.. he also has a muscle problem called Dystonia and it means his muscles are abnormally stiff.
feel free to ask me more or PM me
I am 14weeks pregnant and a type 1diabetic.My Ob told me I have to wait until about the 20week of pregnancy before they can detect any disorder!!!I do my best to keep my sugar levels under control,have not been easy.I had one test done and they told me that my baby is in risk for down syndrome but I refuse to do more test because it would'nt make no different.I dont believe in abortion.
My daughter was diagnosed with 1p36 deletion syndrome on June 16th 2012z she is now 3 months old and is suffering from muscle weakness or hypotonia. She has congenital heart defects,brain abnormality and suffers from sever central and obstructive apnea. She is also failure to thrive and is lactose intolerant
<blockquote><b>Quoting desi&cody:</b>" hello! my name is Desiree and im a young mom of 12 month old baby Cody, my LO has an extremely rare and ... [snip!] ... also has a muscle problem called Dystonia and it means his muscles are abnormally stiff. feel free to ask me more or PM me "</blockquote>
My daughter has a rare sydrome causing muscle weakness the opposite of yours
My youngest two, Ryan 2 (3 in oct) and Aoife 14 months are in the process of being diagnosed with CSID. Its very rare only 7512 people worldwide. Basically their bodies dont produce the enzymes needed to break down sugars and starch.
my new baby boy has Congenital Adrenal Hyperplasia
something i had never heard of but it almost took the life of my baby because until that test that goes off to the state health dept came back we just knew he wasnt doing well
all i really know now is that he will be on meds for the rest of his life just to stay alive
my daughter was born with anal atresia. she turns two next month and had 3 surgeries already. she is still in pain a lot and i wish i could take all her pain away but i cant.she is such a strong little girl and i am so proud of her