As many of you have heard already, a dear friend of the PKU community . a PKU adult and advocate Kelli floyd passed away on the weekend.  Kelli and I first met over 9 years ago on the internet forum http://www.pkuboard.info I met her as Kelli Wrenn.  I never had the pleasure of meeting Kelli in person but we have had many conversations on-line. Kelli was a inspiration. She had such a positive outlook and advocated for adults to try to mange their diets. To try harder and to take one day at a time. To try to drink their formula and she did her best to be supportive. To share her experiences so others could learn from them. I am sad to say we lost touch over the years and I did not make the effort to keep our relationship strong. Life got in the way and our paths took different twists and turns. I sit here now wishing I kept in better contact. knew how she was doing and what she was going through. Spent more time getting to know her. I did see her comments and posts around fb, I did read them when I saw them and commented when I could.

Her death came as a shock to me. I was un prepared and it effected me more than I would have guess. It effected us all in some way. I learnt that she had gone into cardiac arrest  after struggling for a while with health problems and seizures. She was lifeless for 20 mins . They where able to revive her, than she started again to have multiple violent seizures. Her husband never left her side.  The test after the seizures did not provide hope and we leant Kelli was brain dead and was on life support.  These where not kelli’s wishes. Her husband and family disconnected the life support. The doctors said she would live for 30 mins. She fought and held on for 18 hours before God took her home.

I have kept kelli in my thoughts and in my prayers. Along with her husband and family. Kelli touched the lives of so many people and since her death there has been an out pouring of support, prayers and messages from all those kelli touched.

There has also been much self reflection in the community. Specially for the adults. Kelli’s story and death have hit deeply for all those who still struggle with PKU or even for those who do not have access to treatments.  Many of us know of Kelli’s struggles to acess food and formula and that she had gone some time with out regular formula intake. We know she had high levels but was working to stay on track.

There is much fear in the community this week regarding the link between pku and seizures  , as well as if PKU contributed to kelli’s death. thus I felt it was necessary to clear a few things up. Kelli would not want us to be acting this way.

We do not know if PKU was the cause or contributed to the cause of kelli’s death. We do know that seizures are a side effect in some who suffer from uncontrolled, unstable or unmanaged pku and high phe levels. Not everyone who has PKU will suffer these side effects .  I am not saying that it was not the cause. It is a proven fact that people with PKU who have high phe levels are at a higher risk to have seizures.  Though we cannot be sure  that was what happened with Kelli. I Instead of causing fear and alarm and spreading panic , kelli would want us to focus on learning from this experience.

Even if Kelli’s death was or was not pku related, and even if her seizures where cause or not caused by PKU take a look at your own health. If you are concerned about your levels, if you suffer from high levels, if you are not on diet , if you wish to go back on diet, then please seek medical advice and treatment. It is not easy to just “go back on diet” i know that just as much as of all you. But together we can support each other to do our best and try to make better choices and decisions to better our chances.  Take from this and learn from this.  Let it motivate us to take care of our health and fight for access to treatments so something like this does not happen again to anyone.

I also must be clear once again, not all illnesses, health concernes and life problems are caused by PKU. There are always more variables, more causes and more risks. You can have PKU and other health issues non related, even seizures.

However there is always the risk,,  and  if you know you suffer already from side effects, if the damage has already been done, please let this push you to educate yourself, have a conversation with your doctor and your PKU clinic. Try new formulas and gain acess to low protein foods.

We should not speculating at a time like this on what is and what is not related. What the cause was, what the reasoning was and or causing panic. It is good to be aware and to educate yourself, share your story so others can learn. but please refrain from making medical suggestions and sharing opinions with out more fact.  It can cause alot of fear in newly diagnosed families, children , family and friends in the community as well as in our selves . I do not mean to discourage anyone from sharing their thoughts and feelings. We all are here for support , to learn from one another and to educate each other.  We have all been taught or told different things over the years. The research is always growing and developing and changing . The pku community has come so far over the years and I am so happy and grateful for that . We still have a long way to go so do keep that in mind.

I feel very passionately that being on diet for life, and taking advantage of low protein foods and treatments when we have access is the best possible way to keep our body and our brain healthy.

It frustrates me when I hear people off diet talk about how they do not feel the effects, or when someone does not understand PKU and how serious it is and can be. It is not just about diet or what we eat. It is so very much more than that . At the same time, we are very lucky that PKU is manageable and can be treated with food and formula. If we actually use them!

I know for myself I truly feel my best when my levels are low. under 6 and I feel amazing. Higher than 8 and I become so sensitive and out of touch with my body.  I can tell the differance now that I am healthy, how much it effected me to be some what off diet. Though I always drank my formula. I cheated and lied about what I ate. I suffered and I paid the price and still have it weigh on me. I know how hard it is, how dark it looks from the bottom. How hopeless and difficult it is to pull yourself up. I promise you for those who are currently off diet and dont think it is effecting you, you will notice when you get your levels lower and it will amaze you!!!

it truly is like that say, like a fog has been lifted, or a light switch flipped. It becomes so much clearer and it becomes easier . The motivation stemming from just simply feeling good. I wish I could show you all what it is like.  You wont believe it till you feel it.

I encourage you all, who struggle or are off diet, reach out, seek help, seek support, educate yourself and take the first steps to improving your quality of life and lessing your risk for side effects such as seizures . Do it for your family, your children, your siblings, your parents, your spouse,  your friends, your co workers, your team, the public. Do it for Kelli but first and foremost, do it for your self.  It will change you. You can trust me when I say it is worth it. You are worth it. Do not give up. All you need to do is ask for help!

Even if you are not struggling, if you are managing, and think you are doing ok, try a little more, push a little harder, challenge yourself , reach higher and expect more from your self. We can all benefit from focusing more on our health. And not just PKU health, anyone;s health . Any ones journey. For weightless, for fitness, for diabetes, for your brain  , for your heart , for your lungs, for your body,  for cancer, for diseases, for sickness and for health. Push yourself and keep on working on you!

That is what i am going to do . Thank you Kelli for showing me its time to pick myself up and try again. I will miss you. I will think of you and I will do my best to keep your hopes dreams for us all to continue to grow. I will pray for peace and strength for your family and your loves ones. RIP .