The Moore’s PKU Story and the PEI PKU Picnic Fundraiser

On March 28, 2009, Tasha and I welcomed our beautiful baby boy, Liam into the world. As all new

parents are, we were excited to bring home our new addition to the family. In the first week of getting

used to being parents, we received a phone call from the hospital telling us that Liam had PKU, a

rare genetic metabolic condition that prevents the body from breaking down protein and threatens

brain health. We spent the next days, months and years learning as much about PKU as we could.

 

In an attempt to get to know as much as possible about PKU and provide proper medical

care for Liam, we have traveled to the PKU clinics in Halifax and Moncton. We joined CanPKU

(www.canpku.org) and traveled to their events to meet other families, adults and children also affected

by PKU. We read and research as much as we can. We continue to learn about foods, formulas

and medications that can keep Liam healthy. We are blessed to have family support here in

Charlottetown. Without the support from Liam’s medical team, family and friends this would be a

much more difficult challenge.

 

Presently, Liam’s diet is well managed. His weekly blood tests show acceptable levels of Phe (phenylalanine). We

are fortunate that he is on a drug trial for Kuvan (the only medication approved in the management

of PKU) and that he responds to this treatment (many don’t). Kuvan increases his body’s ability to

process Phe and is crucial in helping brain and neural tissue develop as normally as possible. Even

with Kuvan, we carefully measure everything he eats. His diet is a strictly controlled mix of fruits,

vegetables, some grains and specialty medical foods not available in grocery stores. As his appetite

grows so will his reliance on these expensive specialty foods that are needed to control his Phe

levels. Today, Liam is a bundle of energy who loves playing, coloring, participating in sports and being

on the move. He takes gymnastics, skating lessons and plays soccer. Next year, he’ll be starting kindergarten. He

lives a normal life adoring his grandparents, cousins and cats. Like all parents, we worry about his

future and his health. Unlike most parents, we have to strictly control and measure everything he

eats, cook him specialty foods daily and give him medication to keep his brain function as normal

as possible. This is a challenging, expensive, life long battle that is not played on a level playing

field across Canada (see: 2014 Canada PKU Coverage Report Card-FINAL (1)). PEI is the ONLY province

that does not provide some coverage for the special medical foods required to manage PKU. The cost of a low

protein diet with specialty foods is approximately 6 times that of a comparable regular diet.

 

This is a brief look at our story of managing PKU. There are four other families in PEI that we are

aware of also coping the best they can. There are also some people on PEI with PKU that have

been institutionalized due to their symptoms. They all have a little different story, they all have

a different tolerance for Phe and they all have their individual challenges. Please come join us at

the PEI PKU Picnic at the Culinary Institute of Canada on Monday, August 11 from 4 pm to 6 pm

in support of PKU families that have such a small voice and such a great need for help. If you are unable

to come but would like to donate to this cause please go to www.corddonate.ca/averysrideforpku.

 

Thank you from Colin, Tasha, Liam and the entire PKU community.Moore_015w

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