My name is Kevin Alexander, I'm a filmmaker, and I have PKU, also known as Phenylketonuria. This is my story. (I'm on Instagram: @kevinalexander_pku and Facebook: pkujournal.
As a medical student, thank you for uploading this. Your video reaffirms the reason I chose this field and motivates me to keep working hard. I wish you the best.
Kevin Hi, this information is very important. I am doing a petition for Newborn screening to start in Kenya. My two children are the first cases to be diagnosed with PKU. It has been rough. It is tough todate.
Hello Kevin. My son Sergio is 9 years old and has PKU; he is very resposable with his diet and formula ( in Chile it is free till 18 years old ). Lovely video , my son dos not speak english but I will try to translate it to him. He is an exellent student ( top of his class ) plays piano beautifull and makes us proud of him every day. Greetings from Chile
Thank you kevin for sharing your testimony, my wife and I just received word from our pediatrician yesterday that our newborn baby girl tested positive for pku, So after seeing a specialist and learning what were up against, I can tell you were scared, but hearing your story and some of the others on youtube have lifted our spirits and I thank you for that, this is only day 2 for us so were still getting over the initial shock, thanks again.
It’s really something to be able to watch someone going through the same thing, and be able to look in the comments and see hundreds more. I have never met anyone else in person that has PKU and kids tease me for eating different. But this inspires me to get my dream job, and share my story too. I will devote my entire life to support PKU awareness.
I think my professors should show videos like this alongside all lectures about different diseases...the pathways and processes don't do these patients and their stories justice. Thank you for sharing your story, Kevin! I'll never forget it.
Somehow I missed seeing this comment years ago. All these years later, seeing comments like this really does make my day. So, even though it's been 7 years, I just wanted to say thank you for your comment!
My girlfriend has PKU, she's a professional photographer and a beautiful and fantastic person. She sent me this link to give me an idea on how this all is, Thanks for the video, really helped. Keep up the good work and God Bless
I'm one in 20,000! My name is Sadie Bryner. I'm 23-years-old. I'm married and have two beautiful kids. I'm a college student who dreams of being an author. All of this is possible because I also received the treatment I needed for PKU. I appreciate your videos so much. Thank you for opening my eyes to how bless I am!
A very touching video. My daughter pku for the first time I know I felt sad and pain because there are no food in our country, no acids, and no protein-free food, but with the diet, her condition began to improve, thank God, with the fruitful research, I found an association that provided me with acids and thank God my daughter is getting better. When I watched your tape I felt hopeful that my daughter, God willing, will become, like you, successful in her life. Thank you for your positive energy.
Thank you for making this video. I'm 14 and have only met children with PKU. It's great to know that adults have it too. I have CPKU myself and I thinks it's awesome to know that not only children are just like me.
Kevin, Thank you for taking your time and personal experiences to share with the PKU Community. As you said, this is a critical time for PKU and you gave us an amazing voice. I am thankful everyday for my amazing son, who happens to have PKU, and how fun, smart and resilient he has become. He is an amazing 6yr old. I am sure he will grow to be an amazing man like you!
I used to take it for granted that I am able to live a normal life... Because of newborn screening, because of the PKU diagnosis, because of my formula, and because of my diet. Now I'm incredibly grateful!
Hi, I'm a dietician student from Denmark, who is in the initial fase of learning about the treatment of PKU, and your video is a great inspiration. Also as a "beacon of hope" for parents with a new born child with PKU. Some of their biggest concerns are if their child will be able to grow up and live a normal life, and people like you, who are willing to share their story, can give them this hope!
Hi Kevin, I'm Christina, 17 yrs from New Jersey I've found your video very inspirational, it made me cry. It is unimaginable how lucky we are, things could be so much worse. 5 yrs ago, I was introduced to Kuvan, & now I can eat almost anything I want, meat, you name it .Hearing about your life with PKU made me feel comforted about mine and my past. My life has changed dramatically, going from negative-ish to positive, emotionally. Keep living your dream; so happy PKU for you is a positive thing!
Thank you for this video, Never get tired of watching and sharing with who ever is related to my Son. May God continue Blessing you. Proud and supportive Mom to my 14 year old PKU son.
Dear Kevin, our son Lucas (7yr) has PKU and so has our 8mth baby Stella, your video is a true inspiration and it give us hope and strength when dealing with the challenges we encounter on a daily basis. As a PKU parent I believe you are right on the money. PKU awareness is paramount to the future of our children (and adults such as yourself) for them to grow in a healthy environment surrounded by ppl who understand (in the same way as pple understand about diabetes) David, Perth - Australia
I googled PKU because it came up while studying for my exam, i'm studying to be a biologist. This is really touching and i have no idea how it feels but it's weird to think that there is so much up to chance in this life and how much different life could be, i also enjoy thinking, i can't imagine how it would be to be mentally retarded. I'm glad that they are teaching this, it's been talked abut in many lectures, from genetics to evolution, I hope the doctors are studying it as much as we do.
I am so deeply moved and impressed by your video. My sister's grandson is almost 4 years old and has PKU. Jaxson is blessed with wonderful parents and grandparents. He has touched many lives including neighbors who take the time to provide Halloween treats that he can eat. He is a very special little boy. This has been so hard on our family, but your video gives so much inspiration and hope by showing us what wonderful man he can become. Thanks for sharing.
Thank you so much for this video. I have a 13 year old son who really needed to see this. He has been having a very difficult time with his diet as of late. I've been having him watch different videos and stories so he sees how he really is NOT alone in this. Even just last year he actually expressed that he thought we had been lying to him about having PKU. That was extremely saddening to hear from my son. I think him seeing this video helped him to understand the importance of his diet. TY
I hope and pray for all good vibes your way. Thank you so much for posting this video. We all need to fight together for the awareness of PKU and to be louder than those who think they can say exactly what it's like to have PKU because they have a fancy medical degree or even just because they see you everyday. We've all gone through this. To all who support PKU awareness thank you us PKUers are a small number and we are mighty but we need help in this. It's our life!
I have identical twins with PKU. Thank you for making this video. They are only 3 months but I will no doubt be showing them this when they are older so they can understand how fortunate they are to have been born when they were!
I’m watching video right know and I have PKU. This video gave me a real wake up call that if my parents and PKU doctor and dietation. I wouldn’t be anywhere right know. So thank you for making this video. 😊
Wow! Thanks Kevin!!!! My lil guy thanks you also! This is long overdue!! Thanks KC and Will also!!!! Can't wait until my 6 month old son sees the kind of people that have grown up beautifully with his condition! Y'all are the greatest!!!!
Thank you for your video. It was great. I have PKU. Was diagnosed as a baby. Was on formula then low protein diet. Then taken off diet probably in the 80s. The medical food and formulas are great now. I had a hard time with the medical foods because of the sugar in them. I was diagnosed at 3 1/2 years old with type 1 diabetes too. Doing good so far with both diseases 50 years later. Your video was great explaining what pku is. I always spoke about my pku and diabetes as long as I can remember. Keep speaking up for pku.
Thank you for watching, and the encouragement. Hard to believe it's been almost 12 years since I released this. But still talking about PKU! Anyway, just wanted to say thanks for the comment.
I am right there with you brother! I have PKU and I am so thankful that God chose this time for me to be alive in. Thank you for sharing this! It has been inspirational to me!
Thanks for sharing your story, I never had heard of PKU till Luis Suarez (soccer player for Barcelona) celebrated a goal yesterday by holding a jersey saying "I Support PKU". I think its really inspiring that you stay so positive and even go further by wanting to use your knowledge and experience to improve the lives of others!
Hi Kevin, thank you for creating this video. My son Brandon is four and has PKU. We are used to all things that come with his diet now and it has become part of our routine. It is inspiring to see your story and be reminded about how important his diet is for keeping him healthy.
Excellent work creating this video. I have a 1 year old son who was diagnosed with PKU. I admire your positivity towards your diet and I hope I can help my son become as successful in life and positive about his diet as you. Finding out about PKU in the last year, I realised that my 50 years old handicapped cousin also very likely has PKU. She was never diagnosed. The life for her and for her family has been very hard, worrying and physically demanding. It is immense difference in life quality with someone like her and someone who had the right treatment from the beginning. She hits herself and others get close to her, she can't feed herself, she has developed very painful varicose veins because she just stands and rocks on a spot and would not lie down or sit. She is 50 years old and still adored like a baby and gets lots of cuddles and kisses from her siblings and parents. :) PKU does not take away love but I am so glad that all babies are screened these days and they enjoy life like anybody else. I am now investigating if my cousin can be diagnosed properly and get the support she needs.
Thank you for making this video it really shows people the patients side. I also have PKU and have found this video truly inspiring. I also believe as a patient with PKU that we are very lucky to be born now with all the help that we have and when you think about the alternative it really does make you extremely thankful. :D
You are very welcome! And thank you for sharing the film. I produced this a long time ago, and it's been amazing to see how people still respond to it, all these years later. Also, I have a more recent media project that reflects what I'm focused on these days... My blog is PKUJournal.com, and I have a podcast called Never Give Up: A Rare Disease Podcast. It's available on Apple Podcasts and Spotify, as well as the blog. I'm exploring the intersection of life, mental health, and rare disease. How living with PKU, or any other rare disease, can impact your mental health. And I frame it around stories from my life in broadcasting and rare disease advocacy. Hope it helps!
I have PKU and I'm so proud to see how smart people with PKU can be, we all know we can be anything we fucking want and Kevin is showing it to us. You're an inspiration for a 23 years old girl who lately accepted herself for what she is. a NORMAL girl with a genetic disorder. You're helping me to be strong now and for the rest of my life
Im 15 and i have PKU with my little 4 year old sister. This video really got me thinking and i just wanna say thanks for telling people about PKU more people should know about it. i created a dressdown day at my school to help raise money to give to charities that help people with PKU.
Thanks so much for taking the time to search for PKU, and for watching my video. Although the standard textbook definition always mentions the possibility of mental retardation, it doesn't go into depth of what PKU is for most who have it. We live normal lives, so long as we have access to our medical needs. We have great doctors, but not all of us can get access to our medical foods and formulas. Please help raise awareness of our condition, because we are a small community!
I just would like to thank you for making this video. My Uncle Has PKU he's 55 and was not treated till he was 3 and they did not know much about PKU back then. My grandmother has taken him to every doctor appt he had got him the formula and medicine but with a later DX if his life he has had issues but he makes the best out of life and has brought so much joy to our life!! we have been so luck that he did not have to go to a facility to live and that my grandmother has been able to take care of him.
Thank you very much for this video. I am 29 and am just returning to diet and dealing with the ins and outs of insurance and coverage. It is nice to see the face and hear the voice of someone else who has what I have. Thank you for sharing, I truly appreciate it.
When you don't see the immediate effects of being off diet, it's extremely difficult to deprive yourself of eating all the things that you normally eat! You are so blessed to have been on diet from day on and never had any of the food you are not supposed to eat....so you are not so tempted to eat it! I have mild PKU, so it's even harder to distinguish any issues for me. But I am afraid of what the future will hold if I don't stay on diet. I currently am off, due to breastfeeding my daughter.
Thank you Kevin. My 8 year old son has PKU and he would like to let you know he loves to play piano and wants to thank you and hope you will see his video some day.
I am also studying for my medical board exam and came across your video. Thanks a lot, we appreciate your video - having a real life story helps medical students learn so much better. Best of luck to you!
I am not a PKU patient, but I am a nursing student reaching to learn. I came across your powerful talk on PKU and I learnt about my life in a different way. I am an opportunist to be a living begin. Thank u
Hi Kevin! I hope you're doing well and that you're a hero as usual. I'm watching your video as a part of an online course about newborn babies. Thank you for your generosity to share your story 🙋♀
Thank you for watching, and for your kind words! Also on this channel you can find my podcast. It’s called Never Give Up: A Rare Disease Podcast. A storytelling podcast about life, mental health, and rare disease. There’s an episode called “60 Years of Newborn Screening”. Given your coursework, I thought you might like to check it out. Thanks again!
Hi Kevin, thanks for this wonderful message.... I'm a portuguese father of a baby girl 7 months old, which is our second child, but only she has PKU.... Your video it's a window with hope for my family's future, and a perfect view of a very normal and pleasant life for my Camila. Thank you so much for the example!
Such an inspiration :') I'm 17, from Portugal and I also have pku. I don't I have shame for having this problem and I really love the fact that you need to express your feelings about it without any problem with a great video as that.. And you show what I really think: if we do the diet we are just like any other people :)
Good video Kevin, very inspiring, I have PKU as well and am 21 years old. This video definitely will help others to get back on track on their diets. God bless.
Thank you so much for this post. I am trying so hard to help my sister in law, who lives in Turkey, to deal with the news that her daughter has PKU. Although more common in Turkey, it is proving difficult to get her the information, foods and medication to ease the stress she is experiencing trying to come to terms with, and manage, her baby's protein levels. She is so worried that she doesn't have the knowledge or ability to ensure my niece goes on to live a healthy, happy and full life.
great video. my four year old daughter has classic pku.. i was scared as a mother that she wouldn't have a normal life, but as she has gotten older i know she will have a very.normal life... she just is a little different. :) Im so thankful that she is so healthy! again thanks for Ur video
Wow, your video has inspired me immensely. I also have PKU but I have hyperphenylalaninemia. Your accomplishments have shown me that I should work harder to achieve my goals. Thank you Kevin.
Hello, My name is David Schiehsl, I am 18 and your video really inspired me. I too am a very media person I have traveled the world in more countries then states :) . PKU has always been a part of my life. People tell me the feel bad for me but without PKU I could not see myself. Both of us are so blessed in so many ways that we have known we had PKU and I thank the lord every day that I am how I am. I love life and I hope to have a long happy one. You made me cry in agreement. Thank you.
Hello Kevin, your story is an inspiration. My little girl had increased levels of phenylalanine (2.2) at her birth screening. Unfortunately, i DO come from a country with a medical system so overwhelmed, and underpaid that on this day she is 4 months old and WE STILL DO NOT KNOW IF SHE HAS PKU OR NOT. (Not because their lack of knowledge, but lack of decency and time to talk to us). All you get is the result sheet. Her phenylalanine levels were 1.1, 1.2 , 1.1. She is now 4 months old, and i found online that PKU children have light skin and hair, so my stomach started turning again... We are supposed to go tomorrow to yet another test, AND I STILL DO NOT KNOW IF SHE IS SUPPOSED TO BE BREASTFEEDING OR TAKING THE FORMULA!!! I After watching this and reading some medical articles I realized i need help. Am i destroying my child with breastfeeding or not? are these levels of phenyl considered PKU??? Help me please!
Hey, Abe here also have pku and from Vancouver. I wanted to say that I love this video. I am going to university with pku and this video made me so grateful. I hope we all have great successes in are lives. Keep drinking your formula and stay on diet. I also hope Kuvan works for you.
Thanks for share this information , I had a 3 years old grandson with PKU this Made to learn a lot about this condition. I know my knowledge is very poor, but u are inspiration and very good help to the family who had no idea about.feeling blessed because this kid is with ours. I really like to know more about.sorry for my English my native language is Spanish.
Fantastic Video. As you will agree it's not an easy job and you are a great representive of the great things that can be done with a good attitude. A fellow PKU Filmmaker will always be a valued friend. Thanks again for the facebook friendship Kevin. Stay in touch and be well.
Kevin, thanks for such a coherent and personal message. Inspires me to do all I can to help. Hope this goes viral. I'll do what I can. Great production, true story told honestly without cliche. Good on you, mate. Hans
This was a very informative account of PKU. My youngest daughter Sorcha who is 10 yrs old has PKU, she is a classic PKU and is only allowed 2.5 exchanges a day. We live in c. Armagh Northern Ireland
I went to school for it, but my "break" was when I got my first job at one of our local TV stations. I had put together a demo reel and went to various meetings with people in our local market. One was impressed w/ my reel, so he introduced me to the management at the TV station. I worked in news for 7 years, & it was a great way to learn video production, especially documentary style like I now produce.
Thank yuou Kevin. . . My name is Mike & I am PKU and 45 years old. I was cut from the diet in 1975 from my metalbolic doctor as a test. Never went back and was cut from care at age 18. Have not seen anyone since regarding this but plan on it now. My oldest brother Billy is 64 years old & they didn't have the care needed for him at the time. He is and has been institutionalized since age 8. I have never met him because of a court order and parents are now deseased. I live it twice u might say.
I don't have PKU, don't know anyone with PKU. But I am reminded by this video that life is a gift. Health is even a greater gift. If you are watching this video and don't have PKU, take into consideration these people's challenges and ask yourself, what if it is was you in their position? Be grateful. Thank you CreativeControl Productions.
Brian, I'm so glad you were able to connect w/ me. I can only imagine how you feel, but just know it's all going to be OK. I'd love to stay connected w/ you... I have a PKU Facebook page. It's a great way to get connected with other PKU parents, and even other adults like me. I just posted the link in the description to this video.
Just remember that everyone is unique... Don't try to do what you aren't designed to do. Seek out what you are gifted at and stick with that. We all have a unique role to play in life!
I am British, and my older brother and I both have PKU. I guess I was very lucky in that respect, because my parents already knew about it and I have someone else to go through it with.
@TheReolus It is really difficult to get insurance companies to cover both the kuvan and formula. I am 22 years old and I have PKU and I have seen my mom fight with insurance companies my whole life. she actually started a PKU organization in western NY and managed to get a bill passed by NYS saying that insurance companies must pay for metabolic formulas. She is my hero because i have seen her fight for my health everyday and thanks to her i can live a healthy life! :)
@msemmy713 Great job! Keep spreading the word... People really need to know what PKU is all about... And don't be afraid to share the video with your friends. My friends knew a little about PKU, but didn't realize how important it was for me to stay on diet until they watched the video.
I'm so happy you're doing what you love and that you are healthy. I'm Liberty Wilson. I'm 15, and I also have PKU. It's probably the hardest thing for me. I am wanting to spread awareness for PKU and I feel you know how to. Any advice? This video is so inspirational.
Hey, i have mild pku. I am on a unrestricted diet, and have everything in the world to eat at my leisure. This is because of a drug known as kuvan, please ask your dietitian about it.
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As a medical student, thank you for uploading this. Your video reaffirms the reason I chose this field and motivates me to keep working hard. I wish you the best.
I feel you. I see you youtube diseases to see how they present and affect people in real life. I respect that.
Sorry just now seeing this. Thank you for choosing your career!
Kevin Hi, this information is very important. I am doing a petition for Newborn screening to start in Kenya. My two children are the first cases to be diagnosed with PKU. It has been rough. It is tough todate.
James Kabindu I hope your petition works! What you are doing is very important
Hello Kevin.
My son Sergio is 9 years old and has PKU; he is very resposable with his diet and formula ( in Chile it is free till 18 years old ). Lovely video , my son dos not speak english but I will try to translate it to him. He is an exellent student ( top of his class ) plays piano beautifull and makes us proud of him every day.
Greetings from Chile
Thank you kevin for sharing your testimony, my wife and I just received word from our pediatrician yesterday that our newborn baby girl tested positive for pku, So after seeing a specialist and learning what were up against, I can tell you were scared, but hearing your story and some of the others on youtube have lifted our spirits and I thank you for that, this is only day 2 for us so were still getting over the initial shock, thanks again.
It’s really something to be able to watch someone going through the same thing, and be able to look in the comments and see hundreds more. I have never met anyone else in person that has PKU and kids tease me for eating different. But this inspires me to get my dream job, and share my story too. I will devote my entire life to support PKU awareness.
I think my professors should show videos like this alongside all lectures about different diseases...the pathways and processes don't do these patients and their stories justice. Thank you for sharing your story, Kevin! I'll never forget it.
Somehow I missed seeing this comment years ago. All these years later, seeing comments like this really does make my day. So, even though it's been 7 years, I just wanted to say thank you for your comment!
My girlfriend has PKU, she's a professional photographer and a beautiful and fantastic person.
She sent me this link to give me an idea on how this all is, Thanks for the video, really helped. Keep up the good work and God Bless
I'm one in 20,000! My name is Sadie Bryner. I'm 23-years-old. I'm married and have two beautiful kids. I'm a college student who dreams of being an author. All of this is possible because I also received the treatment I needed for PKU. I appreciate your videos so much. Thank you for opening my eyes to how bless I am!
I have had PKU for thirteen years...and it has brought me close to so many people with this too...😀😀😀
Awesome video, man. I too have PKU, I'm only 15, it's awesome to finally see someone who is older than me with PKU!
A very touching video. My daughter pku for the first time I know I felt sad and pain because there are no food in our country, no acids, and no protein-free food, but with the diet, her condition began to improve, thank God, with the fruitful research, I found an association that provided me with acids and thank God my daughter is getting better. When I watched your tape I felt hopeful that my daughter, God willing, will become, like you, successful in her life. Thank you for your positive energy.
Thank you for making this video. I'm 14 and have only met children with PKU. It's great to know that adults have it too. I have CPKU myself and I thinks it's awesome to know that not only children are just like me.
Kevin,
Thank you for taking your time and personal experiences to share with the PKU Community. As you said, this is a critical time for PKU and you gave us an amazing voice. I am thankful everyday for my amazing son, who happens to have PKU, and how fun, smart and resilient he has become. He is an amazing 6yr old. I am sure he will grow to be an amazing man like you!
Thank you for this.🙏😭 Your words have moved mountains.
I used to take it for granted that I am able to live a normal life... Because of newborn screening, because of the PKU diagnosis, because of my formula, and because of my diet. Now I'm incredibly grateful!
Hi, I'm a dietician student from Denmark, who is in the initial fase of learning about the treatment of PKU, and your video is a great inspiration. Also as a "beacon of hope" for parents with a new born child with PKU. Some of their biggest concerns are if their child will be able to grow up and live a normal life, and people like you, who are willing to share their story, can give them this hope!
Hi Kevin,
I'm Christina, 17 yrs from New Jersey
I've found your video very inspirational, it made me cry. It is unimaginable how lucky we are, things could be so much worse. 5 yrs ago, I was introduced to Kuvan, & now I can eat almost anything I want, meat, you name it .Hearing about your life with PKU made me feel comforted about mine and my past. My life has changed dramatically, going from negative-ish to positive, emotionally. Keep living your dream; so happy PKU for you is a positive thing!
Thank you for this video, Never get tired of watching and sharing with who ever is related to my Son. May God continue Blessing you. Proud and supportive Mom to my 14 year old PKU son.
Thank you! If you haven’t seen it yet, check out my new blog, PKUJournal.com. I write about life, mental health, and PKU.
Thank you for this, I needed this video and your optimism. My daughter was just diagnosed and I'm so grateful it was caught.
Dear Kevin, our son Lucas (7yr) has PKU and so has our 8mth baby Stella, your video is a true inspiration and it give us hope and strength when dealing with the challenges we encounter on a daily basis. As a PKU parent I believe you are right on the money. PKU awareness is paramount to the future of our children (and adults such as yourself) for them to grow in a healthy environment surrounded by ppl who understand (in the same way as pple understand about diabetes) David, Perth - Australia
I googled PKU because it came up while studying for my exam, i'm studying to be a biologist. This is really touching and i have no idea how it feels but it's weird to think that there is so much up to chance in this life and how much different life could be, i also enjoy thinking, i can't imagine how it would be to be mentally retarded. I'm glad that they are teaching this, it's been talked abut in many lectures, from genetics to evolution, I hope the doctors are studying it as much as we do.
I am not a PKU patient but I am a researcher on PKU. You are an inspiration also for us researchers! Wish You all the best!!!
Thank you!
I am so deeply moved and impressed by your video. My sister's grandson is almost 4 years old and has PKU. Jaxson is blessed with wonderful parents and grandparents. He has touched many lives including neighbors who take the time to provide Halloween treats that he can eat. He is a very special little boy. This has been so hard on our family, but your video gives so much inspiration and hope by showing us what wonderful man he can become. Thanks for sharing.
Thank you so much for this video. I have a 13 year old son who really needed to see this. He has been having a very difficult time with his diet as of late. I've been having him watch different videos and stories so he sees how he really is NOT alone in this. Even just last year he actually expressed that he thought we had been lying to him about having PKU. That was extremely saddening to hear from my son. I think him seeing this video helped him to understand the importance of his diet. TY
I hope and pray for all good vibes your way. Thank you so much for posting this video. We all need to fight together for the awareness of PKU and to be louder than those who think they can say exactly what it's like to have PKU because they have a fancy medical degree or even just because they see you everyday. We've all gone through this. To all who support PKU awareness thank you us PKUers are a small number and we are mighty but we need help in this. It's our life!
I have identical twins with PKU. Thank you for making this video. They are only 3 months but I will no doubt be showing them this when they are older so they can understand how fortunate they are to have been born when they were!
My new baby cousin has been diagnosed and I’m so glad to know that he will be ok.
I’m watching video right know and I have PKU. This video gave me a real wake up call that if my parents and PKU doctor and dietation. I wouldn’t be anywhere right know. So thank you for making this video. 😊
Wow! Thanks Kevin!!!! My lil guy thanks you also! This is long overdue!! Thanks KC and Will also!!!! Can't wait until my 6 month old son sees the kind of people that have grown up beautifully with his condition! Y'all are the greatest!!!!
Hi Kevin my name is Cindy and I'm 33 with PKU thank you for posting this video.
Praise the Lord for your LIFE!!
fuck the lord.
Thank you for your video. It was great. I have PKU. Was diagnosed as a baby. Was on formula then low protein diet. Then taken off diet probably in the 80s. The medical food and formulas are great now. I had a hard time with the medical foods because of the sugar in them. I was diagnosed at 3 1/2 years old with type 1 diabetes too. Doing good so far with both diseases 50 years later. Your video was great explaining what pku is. I always spoke about my pku and diabetes as long as I can remember. Keep speaking up for pku.
Thank you for watching, and the encouragement. Hard to believe it's been almost 12 years since I released this. But still talking about PKU! Anyway, just wanted to say thanks for the comment.
Outstanding, Kevin!!! Thank you for this...
I am right there with you brother! I have PKU and I am so thankful that God chose this time for me to be alive in. Thank you for sharing this! It has been inspirational to me!
Thanks for sharing your story, I never had heard of PKU till Luis Suarez (soccer player for Barcelona) celebrated a goal yesterday by holding a jersey saying "I Support PKU". I think its really inspiring that you stay so positive and even go further by wanting to use your knowledge and experience to improve the lives of others!
Thanks so much for watching my video! I heard about his goal, and am glad he is raising awareness!
Hi Kevin, thank you for creating this video. My son Brandon is four and has PKU. We are used to all things that come with his diet now and it has become part of our routine. It is inspiring to see your story and be reminded about how important his diet is for keeping him healthy.
Excellent work creating this video. I have a 1 year old son who was diagnosed with PKU. I admire your positivity towards your diet and I hope I can help my son become as successful in life and positive about his diet as you.
Finding out about PKU in the last year, I realised that my 50 years old handicapped cousin also very likely has PKU. She was never diagnosed. The life for her and for her family has been very hard, worrying and physically demanding. It is immense difference in life quality with someone like her and someone who had the right treatment from the beginning. She hits herself and others get close to her, she can't feed herself, she has developed very painful varicose veins because she just stands and rocks on a spot and would not lie down or sit. She is 50 years old and still adored like a baby and gets lots of cuddles and kisses from her siblings and parents. :) PKU does not take away love but I am so glad that all babies are screened these days and they enjoy life like anybody else. I am now investigating if my cousin can be diagnosed properly and get the support she needs.
Thank you for making this video it really shows people the patients side. I also have PKU and have found this video truly inspiring. I also believe as a patient with PKU that we are very lucky to be born now with all the help that we have and when you think about the alternative it really does make you extremely thankful. :D
0:00 I just sent your video to a family in Turkey who need help for 3 children with PKU. Thank you for sharing this.
You are very welcome! And thank you for sharing the film. I produced this a long time ago, and it's been amazing to see how people still respond to it, all these years later. Also, I have a more recent media project that reflects what I'm focused on these days... My blog is PKUJournal.com, and I have a podcast called Never Give Up: A Rare Disease Podcast. It's available on Apple Podcasts and Spotify, as well as the blog. I'm exploring the intersection of life, mental health, and rare disease. How living with PKU, or any other rare disease, can impact your mental health. And I frame it around stories from my life in broadcasting and rare disease advocacy. Hope it helps!
Quick follow up to my previous comment, here's a link to the podcast on Spotify: open.spotify.com/show/5jW0TZlMvtnyK6ivW5kFDE
this is so touching...thank you. I am tearing..
Thanks for watching!
I have PKU and I'm so proud to see how smart people with PKU can be, we all know we can be anything we fucking want and Kevin is showing it to us. You're an inspiration for a 23 years old girl who lately accepted herself for what she is. a NORMAL girl with a genetic disorder. You're helping me to be strong now and for the rest of my life
Im 15 and i have PKU with my little 4 year old sister. This video really got me thinking and i just wanna say thanks for telling people about PKU more people should know about it. i created a dressdown day at my school to help raise money to give to charities that help people with PKU.
Thanks so much for taking the time to search for PKU, and for watching my video. Although the standard textbook definition always mentions the possibility of mental retardation, it doesn't go into depth of what PKU is for most who have it. We live normal lives, so long as we have access to our medical needs. We have great doctors, but not all of us can get access to our medical foods and formulas. Please help raise awareness of our condition, because we are a small community!
Love this video! Thanks for sharing!
I just would like to thank you for making this video. My Uncle Has PKU he's 55 and was not treated till he was 3 and they did not know much about PKU back then. My grandmother has taken him to every doctor appt he had got him the formula and medicine but with a later DX if his life he has had issues but he makes the best out of life and has brought so much joy to our life!! we have been so luck that he did not have to go to a facility to live and that my grandmother has been able to take care of him.
Thank you very much for this video. I am 29 and am just returning to diet and dealing with the ins and outs of insurance and coverage. It is nice to see the face and hear the voice of someone else who has what I have. Thank you for sharing, I truly appreciate it.
Thank YOU! For making this Video!!!! YOUR Story is so important thank YOU for sharing it!
When you don't see the immediate effects of being off diet, it's extremely difficult to deprive yourself of eating all the things that you normally eat! You are so blessed to have been on diet from day on and never had any of the food you are not supposed to eat....so you are not so tempted to eat it!
I have mild PKU, so it's even harder to distinguish any issues for me. But I am afraid of what the future will hold if I don't stay on diet. I currently am off, due to breastfeeding my daughter.
This is amazing!!! Thank you so much for sharing your story ❤ Such an inspiration for my nephews!
Thanks for watching!
Thank you Kevin. My 8 year old son has PKU and he would like to let you know he loves to play piano and wants to thank you and hope you will see his video some day.
I have PKU and it pains me to see others that hasn't been treated in time and become like this..
Thank you for uploading this video, I'm a medstudent and your showed me the reality
Thanks! And a long, happy life to you!
Thank you so much for sharing. My daughter was diagnosed today and this video gave me hope in a time of confusion and worry.
I am also studying for my medical board exam and came across your video. Thanks a lot, we appreciate your video - having a real life story helps medical students learn so much better. Best of luck to you!
I am not a PKU patient, but I am a nursing student reaching to learn. I came across your powerful talk on PKU and I learnt about my life in a different way. I am an opportunist to be a living begin. Thank u
Hi Kevin! I hope you're doing well and that you're a hero as usual. I'm watching your video as a part of an online course about newborn babies. Thank you for your generosity to share your story
🙋♀
Thank you for watching, and for your kind words! Also on this channel you can find my podcast. It’s called Never Give Up: A Rare Disease Podcast. A storytelling podcast about life, mental health, and rare disease. There’s an episode called “60 Years of Newborn Screening”. Given your coursework, I thought you might like to check it out. Thanks again!
Great film my daughter has PKU she's 14 thanks for doing this :-)
Great Video Kevin! Thanks for doing this and increasing awareness about PKU.
Brenda
Cook for Love, Inc.
Hi Kevin, thanks for this wonderful message....
I'm a portuguese father of a baby girl 7 months old, which is our second child, but only she has PKU....
Your video it's a window with hope for my family's future, and a perfect view of a very normal and pleasant life for my Camila.
Thank you so much for the example!
Such an inspiration :')
I'm 17, from Portugal and I also have pku. I don't I have shame for having this problem and I really love the fact that you need to express your feelings about it without any problem with a great video as that.. And you show what I really think: if we do the diet we are just like any other people :)
Im with u man, i got PKU too and its damn hard. But u get used to it, luckily for me my mother makes tons of awesome stuff for me
Good video Kevin, very inspiring, I have PKU as well and am 21 years old. This video definitely will help others to get back on track on their diets. God bless.
outstanding video!
Thank you so much for this post. I am trying so hard to help my sister in law, who lives in Turkey, to deal with the news that her daughter has PKU. Although more common in Turkey, it is proving difficult to get her the information, foods and medication to ease the stress she is experiencing trying to come to terms with, and manage, her baby's protein levels. She is so worried that she doesn't have the knowledge or ability to ensure my niece goes on to live a healthy, happy and full life.
Kevin love your video you are such an inspiration to me and my husband
Thank you for sharing your life story on how you are living a very meaningful life. You are indeed inspiring. Keep the faith. God Bless. ;)
Im Joe ! I live in Michigan. I have PKU. I really appreciate you making this video.
very touching. I am doing a research on PKU and this video has really helped me ...
awesome video 👍
great video. my four year old daughter has classic pku.. i was scared as a mother that she wouldn't have a normal life, but as she has gotten older i know she will have a very.normal life... she just is a little different. :) Im so thankful that she is so healthy! again thanks for Ur video
I have PKU too. I'm 16 years old and it is great that you make a video about this.
Wow, your video has inspired me immensely. I also have PKU but I have hyperphenylalaninemia. Your accomplishments have shown me that I should work harder to achieve my goals. Thank you Kevin.
Hello, My name is David Schiehsl, I am 18 and your video really inspired me. I too am a very media person I have traveled the world in more countries then states :) . PKU has always been a part of my life. People tell me the feel bad for me but without PKU I could not see myself. Both of us are so blessed in so many ways that we have known we had PKU and I thank the lord every day that I am how I am. I love life and I hope to have a long happy one. You made me cry in agreement. Thank you.
Hello Kevin, your story is an inspiration.
My little girl had increased levels of phenylalanine (2.2) at her birth screening.
Unfortunately, i DO come from a country with a medical system so overwhelmed, and underpaid that on this day she is 4 months old and WE STILL DO NOT KNOW IF SHE HAS PKU OR NOT. (Not because their lack of knowledge, but lack of decency and time to talk to us). All you get is the result sheet. Her phenylalanine levels were 1.1, 1.2 , 1.1. She is now 4 months old, and i found online that PKU children have light skin and hair, so my stomach started turning again...
We are supposed to go tomorrow to yet another test, AND I STILL DO NOT KNOW IF SHE IS SUPPOSED TO BE BREASTFEEDING OR TAKING THE FORMULA!!! I
After watching this and reading some medical articles I realized i need help.
Am i destroying my child with breastfeeding or not?
are these levels of phenyl considered PKU???
Help me please!
I have pku. I’m 23. I’m from Italy and I am a medical student 👊🏻
Hey, Abe here also have pku and from Vancouver. I wanted to say that I love this video. I am going to university with pku and this video made me so grateful. I hope we all have great successes in are lives. Keep drinking your formula and stay on diet. I also hope Kuvan works for you.
Thanks for share this information , I had a 3 years old grandson with PKU this Made to learn a lot about this condition. I know my knowledge
is very poor, but u are inspiration and very good help to the family who had no idea about.feeling blessed because this kid is with ours. I really like to know more about.sorry for my English my native language is Spanish.
Stunningly beautiful. It was during the summer, & it was only dark for a few hours. Sunset at about 11:00PM and started rising at about 2:30-3:00AM.
very good video!! Im proud of You. My son has PKU too.
Fantastic Video. As you will agree it's not an easy job and you are a great representive of the great things that can be done with a good attitude. A fellow PKU Filmmaker will always be a valued friend. Thanks again for the facebook friendship Kevin. Stay in touch and be well.
Kevin, thanks for such a coherent and personal message. Inspires me to do all I can to help. Hope this goes viral. I'll do what I can. Great production, true story told honestly without cliche. Good on you, mate. Hans
This was a very informative account of PKU. My youngest daughter Sorcha who is 10 yrs old has PKU, she is a classic PKU and is only allowed 2.5 exchanges a day. We live in c. Armagh Northern Ireland
I went to school for it, but my "break" was when I got my first job at one of our local TV stations. I had put together a demo reel and went to various meetings with people in our local market. One was impressed w/ my reel, so he introduced me to the management at the TV station. I worked in news for 7 years, & it was a great way to learn video production, especially documentary style like I now produce.
wow.I salute you!
Thanks! Good luck!
Thank yuou Kevin. . . My name is Mike & I am PKU and 45 years old. I was cut from the diet in 1975 from my metalbolic doctor as a test. Never went back and was cut from care at age 18. Have not seen anyone since regarding this but plan on it now. My oldest brother Billy is 64 years old & they didn't have the care needed for him at the time. He is and has been institutionalized since age 8. I have never met him because of a court order and parents are now deseased. I live it twice u might say.
I feel you man, i also have pku. Im 13 and i see it not as a disorder, but a challenge in life
Hey!! I have PKU too! I'm 14. We should chat sometime!
Good attitude 😀
Good attitude 😀
I don't have PKU, don't know anyone with PKU. But I am reminded by this video that life is a gift. Health is even a greater gift.
If you are watching this video and don't have PKU, take into consideration these people's challenges and ask yourself, what if it is was you in their position?
Be grateful.
Thank you CreativeControl Productions.
انا طالبة وادرس الاحياء ، لقد جعلتني افهم هذا الحاله بشكل افضل وبتقديم افضل ، شكرا لك
i have pku and when i get older i have been thinking about becoming a doctor for it so i can relate to my patients
Thanks for this video, im Nicola from England I have classic PKU, i inspire to become a tv presenter and raise awareness of PKU
Brian, I'm so glad you were able to connect w/ me. I can only imagine how you feel, but just know it's all going to be OK. I'd love to stay connected w/ you... I have a PKU Facebook page. It's a great way to get connected with other PKU parents, and even other adults like me. I just posted the link in the description to this video.
Go for it!
Just remember that everyone is unique... Don't try to do what you aren't designed to do. Seek out what you are gifted at and stick with that. We all have a unique role to play in life!
I am British, and my older brother and I both have PKU. I guess I was very lucky in that respect, because my parents already knew about it and I have someone else to go through it with.
@TheReolus It is really difficult to get insurance companies to cover both the kuvan and formula. I am 22 years old and I have PKU and I have seen my mom fight with insurance companies my whole life. she actually started a PKU organization in western NY and managed to get a bill passed by NYS saying that insurance companies must pay for metabolic formulas. She is my hero because i have seen her fight for my health everyday and thanks to her i can live a healthy life! :)
@msemmy713 Great job! Keep spreading the word... People really need to know what PKU is all about... And don't be afraid to share the video with your friends. My friends knew a little about PKU, but didn't realize how important it was for me to stay on diet until they watched the video.
Hi Kevin. I was diagnosed with PKU in 1969 but I now eat normal since around 1989. I was caught at 5 days old.
Good for u Kevin 👍👍👍
I'm so happy you're doing what you love and that you are healthy. I'm Liberty Wilson. I'm 15, and I also have PKU. It's probably the hardest thing for me. I am wanting to spread awareness for PKU and I feel you know how to. Any advice? This video is so inspirational.
Hey, i have mild pku. I am on a unrestricted diet, and have everything in the world to eat at my leisure.
This is because of a drug known as kuvan, please ask your dietitian about it.
Good job!