PKU

Phenylketonuria (PKU) is a rare condition in which a baby is born without the ability to properly break down an amino acid called phenylalanine.

Phenylketonuria (PKU) is inherited, which means it is passed down through families. Both parents must pass on the defective gene in order for a baby to have the condition. This is called an autosomal recessive trait.



Our Son's PKU has touched our lives in many aspects.
First it has enlightened us on how much we have taken for granted in our lives.
 We eat what we want when we want and how much we want (this can be a good thing or a bad thing for some of us)
in brief:


But as for our son, his meals must be weighed before he can eat,
He only can have so much of this or that and he can have no Nuts, milk, soy, cereals (unless specially made), meat of any kind is out of the question as well. He can not have eggs either. Lets just say that what you and I eat is isn't meant for him.

He can have limited amounts in fruits and veggies and that is about all he can have from the normal food selections the rest has to be bought from either a specialized distributor which can range from a few bucks all the way up to 100.00 bucks just for some simple items.
How can the price be that high? well lets see, a special box of mack and cheese, costs you and I , what $1.00, may 2 bucks for the really good stuff? Well his is $10.00 for one box.
Oh and his peanut butter is a whopping 8 bucks and that is for the fake peanut butter.

Then there is the scale, ah yes that wonderful device that we as adults associate with , Oh y Lord I weigh how much?!
For Patrick his scales is what monitors the fruits and veggies in take.
And let me tell you something, Things like Brockly and Cauliflower to our son can be really high in protein. I mean could you eat only 16 grams of Bockly? and our son's fee limit is 75, that means he can only take in 75 milligrams of Phe,

So by now you are thinking how in heavens name does he even live?
Well he gets a special Formula called Phenyal Aide.it is what keeps him alive.
It is specially formulated so that the Phe is Already broken down.
Basically it keeps him alive.
YUP, that is right basically he is on an all liquid diet. and his fruits and veggies are what is called "Recreational Items" meaning he doesn't have to have them. but that makes for an unhappy and fussy baby and no one likes that lol.

And yes we have family members that argue to this day stating were starving the poor lad. in which we are not.

Our son's diet will allow him to become whom ever he wants to be and to have what ever job he wants to have.

Oh and he doesn't get the jnk foods that kids will be getting , as he will love his veggies and fruits. We already have kids at the one facility we attend say, that snack looks better then this one I have (as Patrick nibbles and munches on Blue berries or strawberries or what ever it is we have prepared for him)

Also on the other healthy side, He won't suffer from many of the ailments we as adults suffer from like this damn thing called Diverticulitis Which has been the thorn in my side.

Patrick's PKU has also opened our eyes to a more serious look on life was well .
it has opened our eyes to How lucky we really are to have a manageable condition.

Our visits to OSHU's Dorn Becker's Children's Hospital  has opened our eyes to how fortunate we really are.
 I have seen a little girl who had a complete heart rebuild,
I see kids coming on life support and some that are so fragile that if breathed up on wrong they could pass away.

I have witnessed many genetic anomalies like where a person doesn't grow and so many other things.
I have also leanered about Celiax disease and a plusher of other weird metabolic and genetic errors.

Our Son's PKU has touched in many Positive ways to.
 it has taught us as parents to be patient, it has taught us to have self confidence as we have to learn and prepare new meals and execute strict guide lines with famiy and others that might be caring for Patrick for times when we need a baby sitter.

Patrick's PKU has taught us that we can over come challenges and so much more.
 Most of all it has taught us that we have no real control over at what life throws at us and to be thankful for what we  have.

As for me and my fiance, we are thankful to have a happy healthy son, one who is curious, investigative, and full of intelligence, because if it were not for his diet he would be either dead, or intellectually challenged to the point where we would need services and a great deal more.

I am thankful our son has a fighting chance , because of the research that has went in to studying  new foods and such for our son.

Author's Note

A challenge for all young and old.
look up Phenylketonuria (PKU) . YouTube also has many videos on this one including a one Kevin Alaxander a Professional Videographer who has worked for companies like MSNBC and CNN who decided to set his passion aside for Video production to help those with PKU, who himself has PKU as well.