First and formost I assure yku this is verry real.
what you are loomng at is a bo that is from another country.
Do you know why PKU fooods are so expensive?
Some have to be imported from other countries others have to be exported as they are not made here in the US. they are medical foods as well.
This is what we as family members have to read on a daily basis. we have tilter through all the languages to dead our language we are accustomed to.
You also have to get it from a reliable source you just can not go to E-bay and get it.
This stuff haz a short shelf life and needs to be used before it expires because those expiration dates aren't like the ones here in the US. Some of the enzymes break down over time.
If this makes KATUs site. this box of mix is at around $ 12.00
ever ate a 14.00 pancake ? that is like eating at a First class resturaunt.
So we are jealous of our son . He gets a 5 star meal .
we have nothing to complain about and I a not complaining.
on the contrary I am honored and thankfull that our son gets this. We love to see him chow on something that otherwise would be deadly to his brain.
PKU isn't a curse. Its a blessing and an awakening as to what is important in life.
We forget wbat America is about.
We forget the American dream that all are entitled to.
we never chose PKU. It chose us and there is nothing we can do about it. it is a genetic error that effects rich or poor, white or black, national origion and is no respector of religions , or of ethnic origion.
you may be a carrier and not even know it. Your children's children could mary one who poses the gene and produce a child with PKU .
Phenalkenuria, a rare metabolic error which the person's body can not have fish, meet, eggs, milk (save for an aolted amount for formula) cakes, beans , or any thing with protien. it will damage the brain and bring grave arm to the brain resulting in seizures and in worst case. Death.
There are varying degrees ok PKU.
some have a mild case, some have a moderate case, and others like our son has Hyperphenalketenuria. the harshest and most profound diagnoses one can have.
There have been pare ts who have had there kids removed from homes because the family did not adhere to the dietary rules.
This is a serious life threatening condition which must be controlled by diet.
it is never out grown which is is a misstatement often spoken by the uneducated.
People with PMU are no different then you or I.
They can fly planes , drive race cars, or even be professional news and photo journalist. One of whom you probably never heard of.
He is on YouTube. He uses his career to educate and ti inspire.
His name is Kevin Alaxander.
look him up hear hi story for he speaks much better then I can on this subject.
I can say this.
Those of us raising kids with metabolic errors.
We as parents must seek out food technologies, technologies in equipment and sometimes we can volunteer for new possible gadgets.
We must test our son's blood every week. And there are no home tests for this.
simply put there are no sensor grids that are sensitive enough to detect the levels of phen but I t is being worked on and they are close , but it is not good enough.
Scientists have even tried converting those diabetic meters and those have the most sensitive of all grid detectors in them.
so we must mail our son's blood in to the lab. where it takes a week to come back. A week of waiting is it to high or is it to low? and yes to low of PHE or phenylalanine can be just as destructive as it being to high.
And if you think being rich mames it easy? Think again, just cause one can buy all the food doesn't mean that you know how to prepare it or have the drive to do weekly blood test.
And just because one is less fortunate doesn't make them dumb.
And the sadest thing of all rich or poor, a person just can not handle a child with this kind of condition and will turn there back and walk away.
Fortunately those are rare and few.