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1 in 12,000 newborns
Adults with PKU
We Are Not PKU

Stories

koen

 

Koen Kucher is a 14-year-old boy from Regina, SK with PKU. Growing up he loved sports and throughout the years was involved in hockey, soccer, basketball, figure skating, Tae Kwon Do, dance and swimming. In 2016, he plans on joining archery and track & field at Martin Academy sports school. His main sport of focus, however, is figure skating because of the technical and challenging aspects. He has been skating since age three and currently trains year round as a competitive high performance athlete both on and off the ice.

 

In December 2015, he competed at the Skate Canada Challenge in Edmonton and won a gold medal for his province in the pre-novice men’s category. This made him a national figure skating champion, the first that Saskatchewan has seen in 25 years in this sport. Although having a lifelong, rare illness like PKU has its challenges and has set him apart from other kids, it has not stopped Koen from achieving his goals. When he travels throughout Canada to compete, he always packs his medical drink to both make and drink daily and follows the low protein diet. Learning to overcome the challenges of this condition and adhering to the strict dietary requirements has taught him the discipline that he uses on the ice in both training and in competition.

 

(Published 2016)

 

 

hillary

 

Hillary is a 22 year old student at McMaster University. She is currently completing her fourth year in a combined honours program in Economics & Communication Studies. She is an active member of her university community and takes on a variety of leadership roles. She is also a member of MENSA.

 

Hillary was diagnosed with classical PKU within a few days of being born. She is currently treating her PKU with diet and formula and is restricted to less than 8.5g of protein per day. Like many young adults with PKU, she is going through the process of learning to manage her diet on her own both with everyday meal plans and eating out with friends. However, she does not let her restrictive diet hold her back – Hillary spends her summers working in the Rocky Mountains and living in dorm-style staff housing accommodations.

 

After suffering a serious spinal injury and being diagnosed with osteoporosis Hillary is committed to a healthy, active lifestyle and is currently learning how the PKU diet affects strength training and fitness. In her free time, Hillary enjoys outdoor recreation and adventure sports. She recently went on a 10 day white-water canoe trip down the Rio Grande, and managed to accommodate her low-protein diet and medical needs in a back-country, desert environment.

 

Hillary is excited to share her stories with you and hopes to illustrate that PKU does not need to inhibit one from living an adventurous, healthy and successful life.

 

(Published 2015)

 

KALINA

 

Kalina was born on February 2nd, 2008 and lives in Edmonton, AB. She was diagnosed a week after her birth with CPKU. Her parents are very grateful that they have the Stollery Hospital in Edmonton as the dieticians and doctors made it easier to understand and accept her condition. When she was born they gave her Kuvan to see if she would respond, and to their surprise she did! When Kalina was two years old, the Stollery did a study on Kuvan where they had to take weekly blood samples for six weeks. Her tolerence went from 210mg to 460mg in five weeks. Unfortunately on the fifth week, they found an issue with her liver and she was taken off the study. Kalina was advised that she can later go back on Kuvan and her parents decided that next year will be a good time to start on Kuvan again.

 

Kalina is an intelligent and athletic seven year old who plays baseball and gymnastics. Recently she has been asking to play the drums so Santa brought her a set for Christmas – incredibly, this quick learner has now already started to read music! Kalina has surprised her parents with all expectations and they are very proud of her!

 

Kalina is very aware of her PKU – she knows what she can and cannot eat. Her daily intake is 240mg of phe. Kalina loves her Vanilla Phenylade Essentials formula. She is very helpful to her mom by preparing her formula for the day and for certain meals.

 

The entire family went to their first Prairies PKU Day last year in Red Deer. Kalina was excited to meet other children with PKU and was so happy to find out that she’s not the only one. They are all looking forward to seeing their friends again (and meeting new ones) at the yearly events!

 

(Published 2015)

 

THOMAS

 

Thomas is an all-out actor. He likes comedy, drama, making faces, attitudes, and is very close to his emotions. He’s the definition of a chatterbox, he’d be rich and famous if he had a penny for each word he says. If he doesn’t end up as an actor, he will surely be a politician, a commentator, or a talk show host.

 

A straight A’s student, Thomas is always the top scoring of his class, and he’s known to be a positive yet (sometimes too much) talkative student. He’s into making all sorts of videos on his faithful iPod, and he wishes to be a YouTube star someday.

 

He’s very good at playing chess and has amazed people watching him playing against adults on a giant chess board. He likes to eat pastas accompanied by his grandma’s secret homemade veggie spaghetti sauce.

 

(Published 2015)

 

Rosie Pallone is a Powerful Patient!  Watch the video. 

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