Frustrated for the moment


I’m not going to mention any names or what specific situation this is about, because I do not think that is ethical, but I am so incredibly upset right now! I just need to vent a little bit before I can move on and continue with my day.

Those who know me know that I am very passionate about helping the PKU community. I have said more times than I can count that I am so many things (a daughter, sister, friend, dancer, student, etc.), and PKU is only a small part of who I am. However, regardless of how small that part is, it is still a part of my life and one that is near and dear to my heart. As a child I had my share of issues concerning high phe levels, formula, blood tests, etc., and if at all possible I want to help others avoid that. I also cannot imagine the overwhelming fear new parents face when they first receive the diagnosis of PKU. If I can offer words of comfort to help them feel at ease, if even for a moment, I will.

I was recently presented with an opportunity that would have allowed me to help individuals with PKU and their families on a larger level. Instead of just posting a comment here and there to online support groups I would have been able to provide families with real support. When I was first presented with this opportunity I was ecstatic! The thought of being apart of something bigger meant so much to me, and not in a ‘I get to hold some title/status’ kind of way but rather a ‘I can help more people at once’ way. I was pumped and ready to go. Along the way I was met with several pretty hefty challenges and decided not to pursue this mission with those that I currently was. I thought everything would work out though, because I had an absolutely amazing woman behind me supporting me with this endeavor–or rather doing most of the work to start things up. In less than a week we accomplished so much, and I was really convinced that this was going to work out.

Unfortunately, I was wrong. People who were going to help us backed out. I do NOT blame those who did so, because I know they have their reasons. It was just a little saddening when our hopes got up only to be torn down again (or rather my hopes). At this point one of the individuals who was originally involved, though I decided not to pursue this mission with, has put up road blocks. We are unable to get help with this ‘project’ due to this person.

I am heartbroken. Although this person says they will continue and get this ‘project’ up and running, I have serious doubts. All I can keep thinking is that the people I would have been able to help are not going to get support now. It just isn’t fair!! I have had friends suggest I use my energy to help in other ways, but to be honest that isn’t want I want to do. I want to channel my energy to help in an area that I care about. I know eventually I will get over this, but for now I am angry, hurt, and let down. I am going to allow myself a moment to be upset, and then hopefully I can pull myself up by my boot straps and get back to helping others online like I always have.

Here’s hoping that whatever happens, it happens for the best. I just hope these people are still able to get the support they deserve!


About Breamarie91

I am a twenty-three year old adult with PKU. I was diagnosed at nine days of age and have been treated every since. I also have two younger sisters who have PKU. In addition to studying early childhood/elementary education with a minor in creative arts, I also dance on my colleges dance team, work in a child care center and as a youth dance instructor, and function as the organization director of the PKU Organization of Wisconsin, Inc. I am also in the process of opening my own business (a dance

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