PKU -- Molly's Story

This story is told by an eight year old who was diagnosed with PKU through Newborn Screening. PKU is a rare metabolic disorder affecting approximately 1 in 20,000 newborns. People with PKU lack an enzyme in the liver that breaks down phenylalanine, an essential amino acid in protein. Without being on a highly restricted diet, this amino acid builds up in the blood and causes severe brain damage. The diet does not involve simply being a vegan. Grains, beans and soy are high in protein and cannot be eaten. Protein, and therefore phenylalanine, is in everything except water, sugar, oil, vinegar and pure starches. Fruits and vegetables are allowed in the PKU diet, but only in measured amounts. As there are no grains permitted, baked goods are made with fragile starches instead.

Molly has been on a low protein diet since she was diagnosed. She is an incredibly bright and articulate eight year old who excells in all subjects in school. While she struggles with the feelings of being left out in social situations due to her special diet, she still manages to see the bright side of things. As her mom, I could not be more proud.

Thank you!

Category:

News & Politics

Tags:

• PKU
• child's
• perspective

[stuc37]

Molly - I just shared your video w/ Doc and he loved it. He was surprised that Mudge was so mellow..... Great job on the video and we have our fingers (paws) crossed that you win the video ipod!!! -Stuart and Doc

[grandearroyo]

Hi Molly--great video! You are a brave girl.  Keep up the good work and good luck on winning the ipod.

[DisturbedPRODUCTI0NS]

I have pku.  I have the drink with a chocolate flavoured sipper straw and trust me even though it may seem hard now it becoes realy easy when you get used to it, which you will. I'm 15 and I'm already finding it easy to maintain the diet.

[multizombiekiller666]

I have PKU and some times it is super hard, but others times it is not hard at all. But my formula is disgusting I hate it. But when it has a flavor in it, I love it. Tang. Try tang, it's an orangey flavoring.

[thedoveisdead]

My girlfriend has pku its been a all new learning experience learning to cook for her. But I'm proud to say I made her first breakfast veggie burritos over the weekend :) its been hard at times trying to understand what I can and can't cook for her. But I'm so glad she is patient with me and teaching me things about it .

[Immora29]

It took me a long time to find the ideal formula for me. I don't like the flavored formula I prefer the unflavored formula, then in the morning I can either make chocolate milk with one tablespoon of Nestle quik and stir. In Nestle quik it will provide the calcium that you need that you aren't getting in other foods. I'm unsure how much calcium is in it but every little bit helps, or I will Make me a bowl of cereal. I especially enjoy eating CoCo Puffs with my formula makes is yummy.

[MrHad23]

Hi my name is Heath and i have pku and the only way i remember is those nasty drinks i used to have to drink i am 25yrs old and i work at a gym and i have been trying to track down some sort of diet i have no clue what to do or where to go to find out what i need is there a way that you can help me out a little and give me some pointers i dont know where to go or who to turn to please help me

[littlestsweetpea]

Thank you. Our 1 year old has PKU and watching this brought tears to my eyes and a smile to my face! I also love Cook For Love!

[Kasumidoaxx]

i wish i was a vegitarian.. :P

it would make the diet much more easyer to follow xD

well tums up for you !! :D

greetz leonie with PKU

[fr34kyg1rl1990]

WOW she seems to be amazingly bright! Congratulations to her mom and herself, naturally :)

[cookforlove]

Classical

[62willie]

I love her, I just found out my grandson has PKU,