PKU.com Community Discussion Forum New to PKU.com Early Testing Reply To: Early Testing

#8940
Avatar of carrie
clenk
Member

 Hugs- i've sent you a private message-

I know how difficult this is right now- and i suggest you stop researching – try to see if there is someone with pku in your area (what part of ontario do you live in?) and meet them- it does a world of good to see a real live person who has pku and is still ok!!

my daughter has classical pku and is now 3 1/2 months old. I don't know how it happened- it seems like yesterday we got the diagnosis and i rushed her to the city in my pj's bawling my eyes out- and now pku is just part of our life. She is a great little kid and we've had moments of stress and numbers fluctuating and yet it is what it is and you learn to just keep going. 

2010 is a GREAT time to be born with pku- we are on the cusp of so many new discoveries/treatments. I am also from canada (alberta) and know that in canada a few weeks ago one of the major drugs has just been approved (kuvan) and we are soo lucky to have access to so much free food and formula and resourses. it will be ok! 

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