My Pkue'r love him to death

My Pkue'r love him to death

Avatar of AnnMarie

My Pkue'r love him to death

June 26, 2009 in Uncategorized

Devin is still taking his Kuvan and doing well.I hope everyone is signing the petition created by Kathryn Mosley and her daughter.How could they leave Pku and other metabolic disorders out of the healthcare bill?Please try to get everyone you know to sign that online petition on Change.org. I don't get any spam from them or strange emails,phone calls,etc.. I trust that web site, as our 501 c 3 is registerd there and I never had a problem.Inherited Metabolic Support Group of Suffolk County .Of course it's online, but I really don't care when it comes to my kid I will take my chances.The bottom line is we need to be included in the healthcare bill.I don't know about anyone else but I think this healthcare thing stinks so far!!! So far Pku won't be covered and did you know?Whatever tax refund you get back now,will be used to pay for the reformed healthcare?Yes we will pay for everyone else's medical conditions, but we can't help our pkuer's.

2 Reviews of My Pkue'r love him to death

  1. Registered: Apr 30, 2008

    Posts: 0

    Centereach, New York

    HelloThis is my son Devin he’s 10 years old and has Variant Pku.Devin is on Kuvan 10pills a day and eating between 50-70 grams of protein per day.He is very responsive to Kuvan,however we do not go crazy with introducing foods that would be hard to take away.He basically eats the same as he did before but can eat unlimited amounts of the lower phe items.We do allow him to have regular pizza,bread,cheese,and peanut butter, because he had some of these foods before Kuvan.We do not intend to introduce meat even though he could probably handle it with the Kuvan.His levels are almost always a 5.We are extremely grateful to Biomarin.This is a great company and they need our support.They have gone so far beyond what they needed to for our small pku community.They promised to cover Kuvan for Devin and have done so with no problems.BPPS is great to work with.Kuvan is delivered to my front door and when its time for a new shipment they are on top of it.Thanks Cheryl.I’ve been to many meetings with Biomarin and always take away some valuable information.Devin is an active child he plays baseball,football and basketball.When playing a sport he can tolerate even more protein.Devin’s grades have improved dramatically since being on Kuvan.He was always smart but his grades were starting to drop.Since starting Kuvan his back on the honor Roll and is much more focused.His best subjects are Spelling,History,Computer,Latin,Spanish,Bible his trouble spots are Science[sometimes] hand writing and math.Devin is very good at basketball and football.He has won many special awards for his grades and sports and we are very proud of him.He is the light of my life and I wouldn’t have it any other way.    

  2. Registered: May 2, 2009

    Posts: 0

    Topeka, Kansas

    i am so glad Devin is doing so wonderfully and I agree kuvan is a good thing too :)

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