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.
Very inspirational Kevin, although I disagree with the diferentiation between the seriousness of PKU and diabetes, all metabolic diseases need the same care, attention and exposure to help educate. I believe the difference betwwen the amount of exposure is that 1 in 15000 people are born with diabetes in the US and type 1 diabetes has an incidence of 1 in every 400 children. This high amount reflects the exposure certain conditions receive.Well done on creating such a stimulating, emotive video.
Hi Kevin, my name is Joyce and I have PKU. Thank you for sharing your story with me. It's a great reminder to realize how thankful I should be, considering the circumstances others may be experiencing. Thanks for putting our condition into perspective and helping me to aim for more control and a provocativeness spirit! Please continue to post and share with the PKU community! We are few and special!
My daughter Caty who is 6 has classical pku and letting her watch your video was really great since it is so rare she doesnt get to see this so thank you so much!!
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
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!!!!
for the past 7 years and admitted he was not thing clearly when he was off the diet and we noticed as he went back on the diet a dramatic improvement in his personality with in weeks. My dad is an example of why the diet should to stuck to for life and never go off the diet and after they way he was of the diet not only do my grandparents get on his case about keeping to the diet and drinking his formula we do and especially our mom making sure formula and diet are followed
a normal school have friends, graduate high school and university and have a job he trained for and settle down and have a family and be independent. Which would not have been possible if he had not been screened. My dad did go off of his diet for a few years which upset my grandparents and us because of his personality change and they said they took him of the diet for one month as teenager they put him back on because my dad was having erratic behaviour. He has been back on his diet
realize that they started newborn screening. They were dreading having another child and were devastated to hear my dad tested positive for PKU when he was two days old but were in disbelief when a dietician and doctor started to give them what his solid food diet would be and he needed to strictly adhere to phe free formula would prevent mental retardation they religiously were making sure my dad followed the diet strictly. Because they were seeing a normal little boy who grew up to go to
you are very lucky to be born after the invention for newborn screening and the diet. My dad was born just after phe free formula was introduced he was very lucky his brother and sister were not so lucky they are in the care of the province now. they were 5 and 8 when my dad was born my grandparents were not going to have anymore because of what happen to my aunt and uncle. But surprise she was pregnant my dad was an accident but they were just hearing of the diet by that time and did not
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.
My name is Allie & I work for NORD- the National Organization for Rare Disorders. This is such a wonderful video. Your work does not go unnoticed. We re-posted this on our Facebook page. Thanks again for creating this resource for all rare disease patients.
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
Wow! what can I say I am totally speechless...this video is so heartfelt. It really lets a person in on the mechanics of the disorder and the things that we deal with on a dad to day basis. I absolutly loved it. Thank you for doing this video and sharing it to the world!! Carrie cpku 29 arkansas
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.
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.
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!
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.
Thank you everyone for your comments. I'm very thankful this video has been an inspiration for those with PKU and educational for those who've never heard of it. Please continue to share this video so we can educate the public about our need!
Thank you for this! My daughter (10) whose you tube site I am posting is from is an screws and a singer. Check her out. She would love to help with anything you do in the future! I was able to testify in Atlanta and took her headshot. Praying the HHS people get our message!
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!
Fantastic video! We have a 3yr old son who was diagnosed with CPKU when he was 14 dasy old. That was the day my world fell apart, we rushed him to the metabolic clinic, it was then we started to feel better knowing it was treatable and that he would grow up normal and healthy as long as he drank his formula everyday and stuck to the diet. I agree wholeheartedly that more awareness needs to be made so that formula and medical foods are covered medically. I will share your video :)
Great inspirational video Kevin! We have a son Marc-Antony (11-yrs) who was born with a metabolic disorder called Methylmalonic Acidemia, Cbl-C.He was not picked with NBS, was only diagnosed at 7-mths of age; therefore, suffered from severe developmental issues. We have always wondered if he would have been diagnosed at birth, what he would have chosen as a profession later on in life,maybe someone as great as YOU who would help others with the power to change the world! thank u for UR video!
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
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.
missymc20 4 days ago
Very inspirational Kevin, although I disagree with the diferentiation between the seriousness of PKU and diabetes, all metabolic diseases need the same care, attention and exposure to help educate. I believe the difference betwwen the amount of exposure is that 1 in 15000 people are born with diabetes in the US and type 1 diabetes has an incidence of 1 in every 400 children. This high amount reflects the exposure certain conditions receive.Well done on creating such a stimulating, emotive video.
joe3wills 5 days ago
Hi Kevin, my name is Joyce and I have PKU. Thank you for sharing your story with me. It's a great reminder to realize how thankful I should be, considering the circumstances others may be experiencing. Thanks for putting our condition into perspective and helping me to aim for more control and a provocativeness spirit! Please continue to post and share with the PKU community! We are few and special!
mrsjoycekim 1 week ago
hey Kevin i am billy joe i have c-pku and find your video it is great
shylittlecutegayboy 1 month ago
My daughter Caty who is 6 has classical pku and letting her watch your video was really great since it is so rare she doesnt get to see this so thank you so much!!
lwoyneve 1 month ago
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
89Mikylee 1 month ago
we know someone very close to us that was diagnosed we support you fully :)
world2film 1 month ago
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!!!!
Marshrat69 1 month ago
for the past 7 years and admitted he was not thing clearly when he was off the diet and we noticed as he went back on the diet a dramatic improvement in his personality with in weeks. My dad is an example of why the diet should to stuck to for life and never go off the diet and after they way he was of the diet not only do my grandparents get on his case about keeping to the diet and drinking his formula we do and especially our mom making sure formula and diet are followed
davidkat100 1 month ago
a normal school have friends, graduate high school and university and have a job he trained for and settle down and have a family and be independent. Which would not have been possible if he had not been screened. My dad did go off of his diet for a few years which upset my grandparents and us because of his personality change and they said they took him of the diet for one month as teenager they put him back on because my dad was having erratic behaviour. He has been back on his diet
davidkat100 1 month ago
realize that they started newborn screening. They were dreading having another child and were devastated to hear my dad tested positive for PKU when he was two days old but were in disbelief when a dietician and doctor started to give them what his solid food diet would be and he needed to strictly adhere to phe free formula would prevent mental retardation they religiously were making sure my dad followed the diet strictly. Because they were seeing a normal little boy who grew up to go to
davidkat100 1 month ago
you are very lucky to be born after the invention for newborn screening and the diet. My dad was born just after phe free formula was introduced he was very lucky his brother and sister were not so lucky they are in the care of the province now. they were 5 and 8 when my dad was born my grandparents were not going to have anymore because of what happen to my aunt and uncle. But surprise she was pregnant my dad was an accident but they were just hearing of the diet by that time and did not
davidkat100 1 month ago
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.
OfficialVitalVideo 1 month ago
Hi Kevin-
My name is Allie & I work for NORD- the National Organization for Rare Disorders. This is such a wonderful video. Your work does not go unnoticed. We re-posted this on our Facebook page. Thanks again for creating this resource for all rare disease patients.
Alone we are rare. Together we are strong.
afreitas55 2 months ago
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
dahhbeed 2 months ago
Wow! what can I say I am totally speechless...this video is so heartfelt. It really lets a person in on the mechanics of the disorder and the things that we deal with on a dad to day basis. I absolutly loved it. Thank you for doing this video and sharing it to the world!! Carrie cpku 29 arkansas
clmyers0806 2 months ago
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.
susanl19561 2 months ago
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.
msemmy713 2 months ago
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!
DanniHvidtfeldt 3 months ago
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.
Oanhfoust 3 months ago
Thank you everyone for your comments. I'm very thankful this video has been an inspiration for those with PKU and educational for those who've never heard of it. Please continue to share this video so we can educate the public about our need!
FYI... You can follow me on Twitter @KevPKULife and also @KevCCFilms.
creativecontrolfilms 3 months ago
Thanks, Kevin. This video is great. You are amazing. Thank you for sharing your story.
--Rosanne (mom to 2 girls, one with PKU)
rfelicello 3 months ago
Thank you for this! My daughter (10) whose you tube site I am posting is from is an screws and a singer. Check her out. She would love to help with anything you do in the future! I was able to testify in Atlanta and took her headshot. Praying the HHS people get our message!
abbigailaskew 3 months ago
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!
mnbamonte 3 months ago
Outstanding, Kevin!!! Thank you for this...
reeree62 3 months ago
Great Video Kevin! Thanks for doing this and increasing awareness about PKU.
Brenda
Cook for Love, Inc.
cookforlove 3 months ago
Fantastic video! We have a 3yr old son who was diagnosed with CPKU when he was 14 dasy old. That was the day my world fell apart, we rushed him to the metabolic clinic, it was then we started to feel better knowing it was treatable and that he would grow up normal and healthy as long as he drank his formula everyday and stuck to the diet. I agree wholeheartedly that more awareness needs to be made so that formula and medical foods are covered medically. I will share your video :)
chrisnjan36 3 months ago
Great inspirational video Kevin! We have a son Marc-Antony (11-yrs) who was born with a metabolic disorder called Methylmalonic Acidemia, Cbl-C.He was not picked with NBS, was only diagnosed at 7-mths of age; therefore, suffered from severe developmental issues. We have always wondered if he would have been diagnosed at birth, what he would have chosen as a profession later on in life,maybe someone as great as YOU who would help others with the power to change the world! thank u for UR video!
marcdeg22 3 months ago
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
hnders 3 months ago