OUR RARE MOON BABY
I am the mother of 3 Moons Lorelei Moon M. 6-1-2007, Isabella Moon M. 2-2-2010, and
Annabeth Moon M 11-11-2011. My Annabeth was born with a rare chromosonal disease
called Trisomy 9 Mosaicism. Not much is known about this disease because very
few have it and currently she is the only one in the state of Nevada that does
have it. Less than 100 people in the world have it. It is not known how long she will live or her quality of life. She
currently has one kidney, misplaced pupil, 75% deaf, large ventricles in her
brain with a lot of extra fluid, a pfo in her heart and severe reflux with
blood, her brain and cerebellum is a 1/4 of the size it should be and is severely damaged.
She also has a severe dairy allergy and will have it for the rest of her life its not like
a lactose intolerance if a horrible allergic reaction like a peanut allergy.
She is 4 months and still has no control of her head or can lay on her
tummy for tummy time. She can not lay flat on her back or she can possibly drown
from her reflux. She does have some nerve damage but are unaware of how severe
we have lots of doctor appointments to try and figure things out. We are trying
to see as many doctors as we can because children with disablities are not treated
fairly they do not get health insurance or
disability, they base everything on the parents income, so unfair. Our bills are racking up and her formula bill alone is almost a thousand dollars a month and may even get bigger with more food intake. Her medicine is over two hundred and fifty dollars a month and none of this includes normal care like diapers and wipes and personal hygeine and learning tools etc etc. Annabeth is a very expenisve baby and we were not prepared for this at all. When I see other with disabled children now I know exactly what they are going through even when they have a smile on their face just know that inside is not so smiley and give them a hug and buy them a gallon of milk or something, be nice and know a parents life is so much harder with a disabled child and we dont get to live like others. So like Annabeth I will be
fighting even if I have to take it to congress. I will do what it takes for my
baby to survive.
Annabeth Moon M 11-11-2011. My Annabeth was born with a rare chromosonal disease
called Trisomy 9 Mosaicism. Not much is known about this disease because very
few have it and currently she is the only one in the state of Nevada that does
have it. Less than 100 people in the world have it. It is not known how long she will live or her quality of life. She
currently has one kidney, misplaced pupil, 75% deaf, large ventricles in her
brain with a lot of extra fluid, a pfo in her heart and severe reflux with
blood, her brain and cerebellum is a 1/4 of the size it should be and is severely damaged.
She also has a severe dairy allergy and will have it for the rest of her life its not like
a lactose intolerance if a horrible allergic reaction like a peanut allergy.
She is 4 months and still has no control of her head or can lay on her
tummy for tummy time. She can not lay flat on her back or she can possibly drown
from her reflux. She does have some nerve damage but are unaware of how severe
we have lots of doctor appointments to try and figure things out. We are trying
to see as many doctors as we can because children with disablities are not treated
fairly they do not get health insurance or
disability, they base everything on the parents income, so unfair. Our bills are racking up and her formula bill alone is almost a thousand dollars a month and may even get bigger with more food intake. Her medicine is over two hundred and fifty dollars a month and none of this includes normal care like diapers and wipes and personal hygeine and learning tools etc etc. Annabeth is a very expenisve baby and we were not prepared for this at all. When I see other with disabled children now I know exactly what they are going through even when they have a smile on their face just know that inside is not so smiley and give them a hug and buy them a gallon of milk or something, be nice and know a parents life is so much harder with a disabled child and we dont get to live like others. So like Annabeth I will be
fighting even if I have to take it to congress. I will do what it takes for my
baby to survive.