Living with PKU Sisters

Living with PKU Sisters

Avatar of Breanna

Living with PKU Sisters

June 24, 2009 in Uncategorized

For those of you who do not know me my name is Breanna, and I have PKU. Two of my sisters also have PKU. Erica is ten years old, and Genavieve will be one on July 25th. A few weeks ago my sisters and I had our PKU clinic visit. Our trips to Children's Hospital are always interesting. Every appointment we try to cram me and my sisters, our mom, our doctor, our dietitian, the genetic counselor, and sometimes even a few medical students into one tiny doctors office. We get along wonderfully with our amazing clinic staff, and the appointments are like mini parties. I am eighteen now, which means that was probably the last time I will go to a PKU appointment with my sisters. In addition to attending PKU appointments on my own, I will be moving away to college in August. Have you ever heard the old saying 'you don't know what you've got till it's gone'? That is what I keep thinking about right now. Of course my sisters are not really going to be gone, but now that huge changes are occurring in my life I am realizing how lucky I truly am! Not everyone who has PKU is lucky enough to have PKU siblings. Having PKU sisters is a bitter-sweet situation. I love having someone to relate to, and my sisters and I have created many amazing PKU related memories together. On the other hand, despite how positive my family is about PKU, I know life would have been just a little bit easier if I was the only one who was born with PKU rather than three of us. I just wanted to share the wonderful memories I have had growing up with my sisters. Growing up I remember having 'formula races' with Erica to see who could finish their formula first. I remember cooperating for the first time when doing a blood test, just because I did not want my 'PKU buddy' to see me cry. I will never forget the first time I tried to teach Erica how to use our phe book. I ended up comparing milligrams of phe to the the end I think we were both confused. I remember going to PKU events and being so proud to show off my PKU sisters. I also remember never worrying about whether or not I would know someone at PKU events, because I always had my sisters. More recently I remember cracking up when I fed Genavieve her first low protein cookie, and it crumbled to pieces before she got it to her mouth. I will not forget when Erica and I received formula samples in the mail. Neither of us liked the formulas, but we gave it to Genavieve, and we learned she will drink any and every formula created! Every time I go to PKU camp or other PKU events Erica and I have a blast trying all of the formula samples I have collected. I will never forget the time I won a game of Truth Or Dare against my cousins, because Erica dared my cousin and me to drink her formula. Whoever drank it won. Of course I was going to drink it! I'm used to drinking formula LOL! Hopefully my sisters and I will continue creating these memories together. Looking back I realize how lucky I am to have my sisters, and I hope others who have siblings who have PKU will look on the bright side as well! There are so many things my sisters have been able to do that we would not have done if we did not have PKU. If I did not have PKU I doubt I would eat as healthy as I do. My family never would have become vegetarians, which really was better for them because heart disease runs in my family. I never would have gone to PKU camp, holiday parties, summer picnics etc. I would not know all of my friends who have PKU. I probably would not have the dream of becoming a medical geneticist, and so much more!

4 Reviews of Living with PKU Sisters

  1. Registered: Jun 29, 2009

    Posts: 0


    Hii Breanna!
    My name is Sònia and I’m from Spain. I have PKU too and I’m 18 years old like you.
    Sorry, I don’t speak English very well… :P
    I have a sister who has PKU too and I think my life would be very different if she hadn’t been like me.
    I agree with you when you say that it’s an important fact having sisters (or brothers) like us.
    My sister, who’s called Gemma, and I have grown together and we have shared a lot of things and moments because of this.
    I would like to be in conctact with you and to meet other people PKU in other sides of the world. In Spain I don’t meet many people PKU because I live in a small village and I live far of them.
    I wait for your response =)

  2. Registered: Feb 5, 2011

    Posts: 0

    Fort Wayne, Indiana

    i have a sister with pku also. i also hv a 12 yr old son who has pku too. our trips to our appts. are always a trip. its nice to hv someone to share the struggles of pku with how do u handle the day to day life with pku?

  3. Registered: May 2, 2011

    Posts: 0

    Provo, Utah

    Elisa said on May 2, 2011

    haha I love making my friends try my formula! It’s great to see their faces when they get the bitter aftertaste.

    I love that you can see how PKU is such an amazing part of your life. I feel the same way. I’m so grateful I have it. I know I have it for a reason.

    Speaking of which, if you have facebook you should check out the group I made called “I Have PKU.”
    I would love to have your input.!/group.php?gid=13335767025

  4. Registered: May 12, 2012

    Posts: 0

    Lawton, Oklahoma

    That is very inspiring, I to have PKU I have one sister and she doesn’t I was diagnosed with PKU in 1965. So I can see where it was an advantage to have siblings who have PKU. When I was born PKU affected 1:50,000 births. It was hard for me, because I was taken off diet when I was 9 1/2. I am 46 now and have been in the Army for a total of 23 years. I am out of the Army now. So as you can see it is a very rare disorder. anyway when I was growing up I used to think that I was the only one who had PKU.

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