THE PKU CHALLENGE FOUNDER

THE PKU CHALLENGE FOUNDER

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THE PKU CHALLENGE FOUNDER

April 13, 2010 in Uncategorized

Hello my name is Christopher, the founder  of The PKU Challenge. altI am a 41 year old man with Classic  PKU. I was taken off diet at the age of Five. For twenty five years PKU  was non existent in my life. I never thought about it at all. I basically slept my way through school, and as we all  got nicknames in 8th grade for graduation my nickname was sleeping  beauty. I also slept through high school and no one put two and two  together. alt altI did graduate with Cs I could have been an A  student if the diet was present. As I got older I began getting  headaches, not to bad at first. altI got married when I was 23 yrs old still no  mention of PKU in my life so the Mrs. Didn’t have a clue. I graduated  from a two year community college the year we were married from  Telecommunications and surprisingly was a B+ student in college.. From  there I was unemployed for a year. We had our first child, and as the  years went on I would get a job and loose a job. Be unemployed for years  at a time and get Part time jobs.. I became very slow. In speech and  reaction time, I didn’t know but my wife told me all this. I slept  walked a lot.. and then the headaches got even worse. They would take me  out for a week at time. At age 30 my sister who works at a medical  center around here spoke to a Dr visiting form Chicago who told her PKU  adults stay on for life. That was a surprise since we have not heard  from Boston since I was about 12 yrs old. So I made an appointment to  go see the Dr in Boston who treated me when I was five and he still does  today. alt altI had the mind set that there would be no possible  way I was going on that diet.. I loved eggs and milk way to much. But  reluctantly I went back to Boston and was hospitalized for four days so  they could teach me the diet. They told me they did not want to make it  hard for me, they could have me eat 10 gms a day but to make it easy  they will put me on 12 gms a day and for me to measure gms because it is  the more lenient of the measuring methods. alt altMy level when I went in was 33.   During this time I was the sickest I ever was in my entire life. Nausea,  shaking, migraines, chills, fever, everything! Within the four days my  level came down to 2.0…. altfrom there.. for the first six  years of the diet it was a struggle. I was allowed to eat 12 gms a day   and actually are about 12-25 gms a day and my levels were between 13-23  for the most part. After six years of struggling with this new diet I,  who am very good with computers created a Excel PKU Chart and that was  the key to get me on track. I was able to control my diet and stay  within the 12gms a day I was allowed.. my levels were then at this  point between 6-12, much better then they were. So this continued. And a  few years later I was asked to do a study with Kuvan, Unapproved by the  FDA. So I said no. after about two more years Kuvan was approved and  after asking many many questions for more then six months and after it  was approved by the FDA I went on Kuvan. There was a 35% chance it would  work for me and it did. I went from able to eat 12 gms a day to now  eating 30 gms a day. The percentage today I believe is much higher,  around 50-60% of the PKUers it works for. So this continued and my chart  continued for another year of two. altIn September 2009 I was getting tired of counting  days so I stopped my chart. It was the wrong move! I knew I was on Kuvan  now and took for granted what I could eat. From October 2009 until  January 2010 I was really in the darkest period of my life, since the  death of my brother in 1987. I had very bad dizzy spells and many many  migraines, I had a horrible outlook on everything, my focus was just  gone and I seemed out of touch with everyone and everything. My wife was  at a point where she did not know what to do and after seventeen years  of marriage she wanted out. altOn December 1st 2009 I decided I needed to take  control of this diet again. So I went back to my chart.. dug it out of  the dust if you will, (although it is on the PC). I was very sick still  in December and after following my diet for 17 days it took all of 15  days for me to start feeling better. And I began to see some sun beyond  the horizon. On Christmas day I felt the best I felt in many months.  Problem is with PKU.. I cheated on Christmas and with leftovers the day  after Christmas… altallowed 30 gms a day I had 43 gms  on Christmas and 37 gms the day after Christmas… then new Years came  along and I did something I haven’t done in almost 10 years… I had the  equivalent of the Chinese food style Meat Lovers dinner… that was a  massive mistake. I had 65 gms on New Years eve. And I was focused to  not cheat for a very long time after that. But I was back to step with  headaches.. dizziness. My attitude was horrible and my wife and sister  were very concerned. altSo I made an appt for January 12th  to go see them in Boston (the PKU Clinic). I brought the heavy  artillery, my wife and sister to speak on what they see and what could  be done. It was a 90 minute drive home after Boston and I all the way  driving home I thought to myself “what was accomplished?” and also  thought there has to be more in the same situation as me out there. I  knew of a few PKU adults on Face Book. So I set out to find more and  mark them on Google earth. _x000D_ _x000D_ _x000D_ Hi there, I'd like to know whether there are more online shops like"Taste Connections" and maybe you could give some addresses. Thanks a lot....Marion_x000D_ _x000D_ Order your car magnets today goto www.ThePKUChallenge.com to order _x000D_ altSo I did that. And the domino  effect took hold where within the first week I found over 100 PKU adults  around the country. I then created a web site and got a domain name for  it and it was the central place for communication for the PKU adults. I  wanted to make it completely interactive. altBoston insisted on have me go even further with  this search for PKU adults and so I did. I soon wrote my first proposal  for funding and have since written three. Now The PKU Challenge is more  then just a locating PKU Adults. It is an all out Search & Rescue of  PKU adults around North America. altI also met an absolute angel God sent me to work  with. She told me she wanted to work with me. Kyal from Plaza Drug, is  an answer to our prayers. She is so smart and so passionate to help  people with disorders like PKU. alt And I believe the success of The PKU Challenge  took place because a three things. alt1. I am passionately driven to find and help PKU  adults, and passion makes the success altaltaltaltaltaltalt possible. alt2. Kyla is making a lot of this help a reality. It  is her Knowledge and passion as strong as alt mine that makes this all work. alt3. I also have PKU which I think appeals to other  PKU adults I am trying to help. Because I know exactly what  they are going through. altThis is my story, this is the real  struggles of PKU adults, and there is a massive difference I come to  find out in the past month or so, between PKU adults who have been off  diet for a prolonged period of time and those who have never been off. altA completely different mind set.  And the ones who have never been off have to know we.. Us PKU Adults,  First generation, took the hit for them so they could have a better  life.. altTo all the PKU adults. Take it one  day at a time. I am here to help you now, and I have now since been on  my diet, today is day 97.. Making 100 days for all you PKUers. God Bless you all.. One more thing I must say I have the most patient  wife in the world going on 18 years this month. Living and learning. And  she gave me five beautiful children. I only wish I could have been the  provider for her. She deserves so much better then me. But I am grateful  for her love, understanding and patients with all that I have, and  still do put her through. She is a blessing to me. You can see this Blog and much more on www.ThePKUChallenge.com PKU Adult Search & Rescue, One Person At A Time altSo I did that. And the domino  effect took hold where within the first week I found over 100 PKU adults  around the country. I then created a web site and got a domain name for  it and it was the central place for communication for the PKU adults. I  wanted to make it completely interactive. altBoston insisted on have me go even further with  this search for PKU adults and so I did. I soon wrote my first proposal  for funding and have since written three. Now The PKU Challenge is more  then just a locating PKU Adults. It is an all out Search & Rescue of  PKU adults around North America. altI also met an absolute angel God sent me to work  with. She told me she wanted to work with me. Kyal from Plaza Drug, is  an answer to our prayers. She is so smart and so passionate to help  people with disorders like PKU. alt And I believe the success of The PKU Challenge  took place because a three things. alt1. I am passionately driven to find and help PKU  adults, and passion makes the success altaltaltaltaltaltalt possible. alt2. Kyla is making a lot of this help a reality. It  is her Knowledge and passion as strong as alt mine that makes this all work. alt3. I also have PKU which I think appeals to other  PKU adults I am trying to help. Because I know exactly what  they are going through. altThis is my story, this is the real  struggles of PKU adults, and there is a massive difference I come to  find out in the past month or so, between PKU adults who have been off  diet for a prolonged period of time and those who have never been off. altA completely different mind set.  And the ones who have never been off have to know we.. Us PKU Adults,  First generation, took the hit for them so they could have a better  life.. altTo all the PKU adults. Take it one  day at a time. I am here to help you now, and I have now since been on  my diet, today is day 97.. Making 100 days for all you PKUers. God Bless you all.. One more thing I must say I have the most patient  wife in the world going on 18 years this month. Living and learning. And  she gave me five beautiful children. I only wish I could have been the  provider for her. She deserves so much better then me. But I am grateful  for her love, understanding and patients with all that I have, and  still do put her through. She is a blessing to me. You can see this Blog and much more on www.ThePKUChallenge.com PKU Adult Search & Rescue, One Person At A Time

4 Reviews of THE PKU CHALLENGE FOUNDER

  1. Registered: Mar 15, 2010

    Posts: 0

    Belfast, INTERNATIONAL

    this this is great news 4 all with pku i have pku and am 44 my brother also has it my sister dosent but she has know real understanding of its effects in the long term, i have been off diet for some years, but am trying really heard to stick to it. i find it very difficult as my 2 children do not have it. so i decided not 2 have any more children i i blessed 2 have 2 healthy children i also have been in and out off work over the years anyway great two read your story. finn

  2. Registered: Aug 11, 2010

    Posts: 0

    Yerevan, INTERNATIONAL

    Hi my name is Ann I am from Armenia, daughter of my sister is 1years old and she is PKU patient , in Armenia there is no low protein foods for PKU diet,for this problem we want to go and live in USA but we can’t, please if you have some informaton about how and from where we can order good foods for our baby, please write me annadokhoyan@yahoo.com.
    Thank you

  3. Registered: Dec 28, 2010

    Posts: 0

    manchester, New Hampshire

    hey chris good to hear from you but my challenge info is realy !!!!!out of date so connect me and will rejoin ok ?
    contact me at : BJoeGray@aol.com

  4. Registered: Sep 17, 2010

    Posts: 0

    colorado springs, Colorado

    hi chris my name is sara im 41 and i have classic pku also . i have stuggled all my life with diet . levels anywhere from 10 to 25. my intake is only 7 gms a day i would love to be able to increase my intake but my dr says i cant. its frustrateing because even with formula and 7 grams im still hungry so i dont want to comply. im in a study now to see if kuvan will work for me i hope so .i havent been able to find anyone my age with the same pku as myself. i do agree one day at a time. i could be having a good day then something will trigger me to want to go off diet .if you have any advice i would really apricate it . my husband of 15 years really tries to help but sometimes hes more harm than good.send me a email with somepointers on succeding on this diet.pkubrat41@aol.com thanks

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