I am a new mom in South Carolina. I was happy to give birth to my daughter in April. My new bundle of joy. I was quickly saddened two weeks later when they told me a test that they had to retake came back positive. I didn’t know what the test was for, all I had known was that it was positive. That stumped me. I was told my daughter has PKU. So young, so innocent. She has to later on in life be told that a lot of things she cannot have because she has this condition. I thank God everyday that shes here and thats the only condition that she has. We can overcome it. As a new mom to this, I would like any and all information from anyone out there who has or have a child that has this condition. Are there any agencies that I can hook up with to help with food or supplies, is there any groups in my area that I can join for support, funds for PKU children, or anything that they are entitled to as far as anything. Please anyone with answers I would love to hear from you. God bless everyone.
Hey, congrats on your baby girl! I’m 16 and both me and my 8-year-old sister have PKU (we also have 5 siblings who don’t have PKU). Can I ask where you live? I know alot of States have support groups that get together for things like picnics, walks, Christmas cookie exchanges and other things. If you talk with your daughters doctor or dietitian then they might beable to point you in the right direction. nBreanna
Thank you for the information. I can tell you’re handling it well. I’ll try to be strong and teach my daughter as she grows to be as strong as you and the many others who are dealing with it. We are all in it together.
alisya, i can so understand how u feel ,, even though it is me with pku..my mom would tell me constanly how hard and lonely the frist 5 yrs were for her.. jsut about everything u said.. is exactly word for word what she always told me. u are not alone! i jsut wanted to say hi and let u know thats its ok .. ur baby will grow up healthy and happy as long as she follows her diet. and honestly it gets easier.. im now 21 and there has been so many advancments and new foods that has made my life so much easier. and a lot more is know too! i was told all my life untill i was 18 that i could never have a baby. this is not true! i was so exctatic and shocked. it has taken me a hole year to fully understand just how amazing that is and real it can be for me. i live with my long time boyfriend of almost 3 yrs, i am a recepsionist at our local lumber /hardwere store and i will be going to school next year to become a counsellor. my dream is to open a genetic and metabloic non profit support center.. so u see i am very normal and healthy.. though i had my share of stuggles, many stuggles in fact, io had high levels for many years as i didnt follow my diet well, i have mild short tearm memory loss and apperantly i have lossed one IQ point. i was very off track and amited alot to my hospital for high levels.. but in the last 2-3 yrs i have really pulled my life around. as long as ur daughter follows her diet from the beging through out life there is no reason why she will not grow to her fullest potential and have her own wonderful life one day! i wish u and ur family all the best.. and if u ever want to talk to me personaly.. feel free to contact me.. ttyl!