Details

Added by on 2011-11-22

My name is Kevin Alexander, I’m a professional videographer, and I have PKU, also known as Phenylketonuria. This is my story.

Leave a Reply

11 Comments

  • Alley 3 years ago

    Your video is beautiful and your initiative is inspiring. I am a parent to a 4 year old PKU toddler and a sister to a 13 year old with PKU. The effects of untreated PKU hit close to home. After my brother was diagnosed, we discovered that my mom had a distant relative who was institionalized due to untreated PKU. As a parent, you always worry about your child. Even before he was born, I found myself worrying about my brother and whether he will stay on diet as he gets older. I hope that in the future, stories like yours will help both my son and my brother know that they are not alone . I hope that when times are frustrating and they face issues like peer pressure, medical coverage, high costs of medical foods, etc, they will understand the benefits of remaining on diet and formula and will be able to do the wonderful things for the world that they are meant to. I’m not sure what my brother wants to be, but my son would like to be the next professional bowler. 🙂 Keep Fighting. Newborn Screen is a must for everyone.

    • Kevin Alexander 3 years ago

      Thanks so much! I’m glad the story touched you and your family!

  • Olive Hunt 3 years ago

    We live in the UK and have just seen your wonderful video My Life with PKU. My PKU son returned to diet 2 years ago at aged 40 after 25 years on a normal diet . He is a now a changed person – confident, outgoing and most of all happier. This feeling of wellbeing gives him the incentive to keep on diet for life. He has a wonderful metabolic team at the hospital who take care of him with care and concern. We found your video inspirational . Keep up your fantastic work for all the PKU people around the world.

  • Thanks so much for sharing your story. I am a parent of an 11 year old boy with PKU. We have been very involved in our PKU community here in BC, Canada. I’m pleased to report that my son was diagnosed at birth because of Newborn screening, and has been treated since birth. Connor is a thriving happy highly functioning typical boy. This is only becuase of the support and care we have received through Vancouver Children’s Hospital and the CANPKU http://www.canpku.org/. Sharing your story will help to inspire my son to stay on diet for life! We are confident he will lead a normal healthy life as long as he remains on diet. As you mention in your video, its his norm, and having PKU doesn’t have to limit his future. I beleive this and so does he, but not without special care and attention. He is also being supported with KUVAN the first pharalogical treatment for PKU and as a result he has been able to lower his blood phe by 52% while increasing his natural protein intake by 25%. We are grateful to the scientist that continue to seek better outcomes for the PKU patients around the world.

    • Kevin Alexander 3 years ago

      Thanks for watching! And glad to know your son is doing well!

  • Connor 3 years ago

    i liked the video. I’m 7 years old and i have pku.

  • Scott 3 years ago

    Thank you Kevin for sharing your story. I am planning on sharing this video with my son who is now 15 years old. You story shows how important it is to follow the diet. It’s one thing for mom or dad to tell you child that but often it is recieved much better from someone else and even better from someone with the same condition. He has been doing well on his diet but sometimes slacks off a bit. I hope seeing this will reinforce what I have been telling him for years. I would love to hear how you deal with the diet while going to remote locations where cooking or supplies are limited. I think my son may be concerned about going back country camping for several days and what he might eat. Please share some of your experiences if you can. Again, thank you so much.

    • Kevin Alexander 3 years ago

      I’m fortunate that my tolerance has been high enough that I don’t have to eat many specially created low protein foods. I am able to eat a basic vegetarian diet. And in the last few years I’ve responded to KUVAN and can eat almost normally. Still no meat, but I can now eat almost anything else. That being said, I don’t have a difficult time when I travel. My wife, however, has Celiac disease, and must eat strictly gluten-free. We face some of the send challenges traveling with her diet as they typical PKU diet. When we went to Ireland a few years ago we had boxes of food shipped to the house we stayed in. If possible that’s a great option: just have low protein food shipped to where you’re staying. Camping would obviously be a different story. For advice on that I’d highly recommend talking with your clinic. Having both food and formula is a must, and can be challenging if you’re going on a back country camping. I haven’t done something like that myself, so I’m not sure what to recommend.

  • I have a daughter that was born in 1988. she is always fighting just to get insurance to cover her formula. she has been on diet for life, but has levels at about 25 and that’s being on the true diet. Your video was so powerful, I read so much about people off diet and the struggles they have, i’m always so confused as to why they would ever go off. My sister had two sons they had Duchenne muscular dystrophy they were perfectly normal except they could not move and knew they were dying. I always told my daughter how lucky she was that a diet makes her normal, and what her cousins would give to have a diet that would allow them to stand up and live a full life. they died at 25 an 32 years old. I have always tried to point that fine line out to my daughter, that its by the grace of God that she was born when she was, that in reality under other conditions she would grow up with brain damage and never know normal. Your video explains things so true to the point. You did it right and your life reflects that. every new pku parent should strive to make sure to raise their child to stay on diet for life. every pku patient graduating from high school should see your video, because that’s when the bad choices begin. they need to see what their future can be like if they just stay the course. thank you so much for sharing. please continue to reach out to others with pku, God bless