PKU and us - WINNER of the Rare Disease Day 2009 VIDEO CONTEST!

A toddler must have a protein restricted diet due to the rare metabolic condition PKU. With this condition, protein becomes neurotoxic to the person. Without this extreme diet, the brain suffers severe damage in the first years of life, resulting in mental retardation.

The video is a very personal (and whacky) explanation of what I have to do as a mother of a child with PKU.

Category:

News & Politics

Tags:

• phenylketonuria
• PKU
• michellehays
• diet
• toddler
• protein
• exchanges
• phes
• phenylalanine

[DisturbedPRODUCTI0NS]

uh I have PKU and I can tell you that it is NOT a disease as you have suggested in the title >:/

[Lewisrick9]

I thought that this video was very informative

Rick Lewis

[GMCboy1500]

i know about PKU my unlce has it but he wasn't caugth in time so he is mentaly retardation and my cuzin has it but he is under control to the best as it can be and no we just found out my lil brother new baby has it...it runs in my family

[RareDiseaseContest]

Thanks for the video. We too are trying to aid researchers in their discovery of cures for these children, and we are doing this by supplying them with the research software they need. Together with the CRDN we are giving away a rare disease research system worth $50,000 to the winner of a video submission contest and the rare disease organization of their choice. To learn more about this contest visit RemedyMD's website and click on the banner at the lower right

. Good luck!

[margaret4life]

Oh my god, that mom is awesome. I wish my mom was as cool as that. I have PKU too, and well it pretty much sucks. Well sometimes it does, most of the time it's okay, but there are some really tough times. I hate getting questions like you can eat soy right? It's unbelieveable how little people know about what they consume. I am the person who jumps up and down in the grocery store like that mom when I find food I can eat. No wonder my dad won't take me shopping.

[DruandSpike]

Ha you think you have it tough being her mom, just be there for her during high school when she starts feeling how much of a choke hold it actually has on her life.

Also my three absolute favourite questions I get from people are;

So can you have tofu?

What about soy!?

You must eat a lot of nuts right?

Restaurants are my favourite place to go! They don't make me realize how freaking terrible my choices are ever!

Or when your sister 'forgets' you have PKU and feed you a salad with nuts in it!

[SuperSport1966]

Seriously? She's going through a great deal of stress, and is using this as an outlet to release some of her anxiety, but also help others. Also, if you watch YouTube very much, she's using a common method of creating videos.

Thank you Mom for your info. I deal with Dercum's Disease daily, and I totally understand where you are coming from. I wish someone would post a video like this for us. Good for you for being strong for your beautiful daughter. She's a lucky little girl.

[pidonek]

OH GOD. This mum is a little bit crazy. I have PKU. And my mum is normal! xD This mum looks like SHE has a rare disease. More serious than PKU.

[csilva1112]

I bet the mom is ADHD!!!. Good info but she annoys the hell out of me

[SexyJamiesGirl]

my daughter is 7 and shes a twin but its just her not her brother shes normal and growing great