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This is chocolate gold ✨🤎

Můžu mit otázku kam putují děti o vás ❓ bylo by možné schůzku ❓

Thankyou for sharing your story!

Brilliant story-telling! Thank you, Kevin. "Every day, with every choice, we are building a legacy!" - I will try to think this way more often...

I have pku

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 🙋‍♀

You look like james franco

As a father to a 14 month old with classic PKU and my family appreciates your efforts more than you know.

Great interview. Well done Kevin. Thank you for your work 🙏

Thank you, Kevin!!

Thank you for sharing your video.

👏👏👏👍!!

I have pku

I'm 58 and have pku...didn't know until I was 18...ate everything all my life..now I have to change my diet. It's pure hell.

Hi Kevin. I was diagnosed with PKU in 1969 but I now eat normal since around 1989. I was caught at 5 days old.

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.

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.

My daughter has pku she is 28 years old and diagnosed at birth she decided to stop the diet nearly 10 years ago and now we are estranged 😢she will not adhere to her diet 😢

Hi Kevin, my name is Bernadette, and I have pku,my brother has pku ,and My sister, has pku ,and my daughter has pku , and my cousins daughter also has pku , I am from the uk i would love to hear from you

My husband has PKU. He's been on Palynziq for 4 years. He's able to have a un restricting diet due to it. Have you ever considered it? Just curious on your views on it.

This is amazing!!! Thank you so much for sharing your story ❤ Such an inspiration for my nephews!

I have pku and it is challeging to live with this, i was diagnose at age16 kind of late. Due to the country where i born at the time didnt have knowladge to treat it.

You are so brave and very strong person✨

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.

I am lucky to of been born in America in the 21st century and be diagnosed in the first 2 weeks of me being alive, seeing these channels and seeing what other people are going through makes me no uncomfortable with my condition. I sometimes think I should just eat normal food to be normal. But knowing what could of happened and how I’m am so lucky to be born in the right place and time, I shouldn’t give it up for just trying to be normal.

I have PKU and it pains me to see others that hasn't been treated in time and become like this..

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

I'm a Father of a daughter who has PKU and we live in England. Just came across this post as my grandson has PKU and my daughter is doing a cooking blog for PKU. Absolutely inspiring loved the post. Thank you.

Unfortunately, there is no screening analysis in the country where I live.That's why I found out about it late in my son.we found out in his 17th month

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.

I have pku. I’m 23. I’m from Italy and I am a medical student 👊🏻

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. 😊

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.

hey im 28 y/o and i have PKU also. Big love <3

I am an adult how do I get tested for pku?

Hey Kevin ! my names John ,I’m 32 and I myself have pku. I would love one day to contact you and talk. I’ve never really spoke to anyone with pku. Before. Please get in touch

I live in the USA. My son was screened at birth. My son was misdiagnosed negative pku after initially testing positive. 11 yrs later a dna test showed he is pku positive. I just found out 3 weeks ago. My son suffers from autism and adhd he has severe behavioral issues so severe that prevent him from attending school he stims severely he has social issues he has had seizures and is on multiple medications. I and his doctors believe the majority of his issues are due to the untreated pku. I am in shock.

Hi Kevin my name is Cindy and I'm 33 with PKU thank you for posting this video.

Check your ableism, dude. People with intellectual disabilities of all kinds have valuable lives too. Glad you have a life you like - AND people who have disabilities can also have good lives.

I recently have had my blood phe levels drop into the 200-300 range after a tumultuous struggle with pku for 38 Years. I've on palinzq for about a year now the 1st in Idaho to take the plunge.

My new baby cousin has been diagnosed and I’m so glad to know that he will be ok.

Thank you for this.🙏😭 Your words have moved mountains.

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!

Hello, I also have pku. And am having a hard time finding people who will help me get the foods and medical care I need. I live in Washington state. And can not afford insurance. But once you become an adult you do not receive the care you need in visits with a dietician or even being able to get on the new medications that they now have. Can you point me in the right direction?

PKU SQUAD, LIKE IT UP!☝

I'm 11 and I have pku

I have pku 2 so can you tell me how to upkeep my levels down because if I don't keep my levels down I have to get fed by a feeding tube

12 years of pku let's keep going!💪

Thank you for uploading this video, I'm a medstudent and your showed me the reality<3

It’s hard for me to do well in school with pku because I’m pretty sure it makes me terrible at concentrating but unlike someone with something like dyslexia I don’t get to use the excuse that I have this disorder because it’s such a rare disorder.