Community Discussion Forum Adults and PKU Off the diet Reply To: Off the diet

Avatar of mary

hi there may rogers
my name is mary-jo i am a 46 year old
adult w/pku i have been off the dite
sence i was 7/8 years old b/c the
dr told my mother 2 stop it
then i also have 2 other siblings
w/p.k.u they did not get any thing
my 2nd older sister was 2 b 4 they found out
she had it so she just kepet throwing up
b/c it was 2 late 4 her it my bro was very
sick as a baby so they could not get it 2
stay down and they knew i would have it
so i went on the formula as soon as i was
borne ,i was born in 61 so they did not
know any thing about it back then so
my morther was learning along w/ the drs
and that is all they knew so the drs
told my mom that it was all right
2 take me/us off the formula at the age of 7
b/c that is when they brain is fully developed
thats what the drs told my mother
so thats why i was off the dite 4 this long/but
now my sister,i r trying 2 get back on the dite
we doing what they call add-inns u mix this powder
in w/your food so i feel that my life has been wasted/and i feel v gulity about this. b/c they did not have there golden years b/c of 3 of us the other 2 are worse
than me but my sister is married/oldest sister is normal but she got an enzyme from both my mom,my dad
she is a carrier. the sister that got the enzymes she got
left my mom,dad w/1 4 each of them/and that left the 3 of us
with nothing. /yes i hate haveing p.k.u it rulened my life,
my mom,dads i think !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
thank you 4 listening
too me

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