Alone we are rare, together we are strong. PKU Strong.

What does it mean to be PKU Strong?

It means when faced with challenges we stand tall.

When a parent first receives a PKU diagnosis with their newborn, They stand up to the challenge and immerse themselves in our community. Learning everything they need to do to make our children strong, happy, healthy and normal.  They mourn a little bit but then they learn that normalcy and a healthy life is still attainable and it pushes them through all the fears and dark days.

A parent raising a PKU child and just trying their best to give them the best start in life.

The PKU parent who spends hours and hours daily to log food records, take blood tests on their own child, makes formula, orders foods, weighs and portions their child’s food.

The PKU Parent who carries a scale in their purse.

The PKU parent who worries every day when their child is away from them that they are being fed properly or making the right choices for themselves.

The PKU parent who cries at night when their child is sick or cant get the last of their formula in.

A PKU child learning not to share their foods with friends or take food from others. Learning that what they eat can effect their brain development.  Learning the yes foods and the No foods.

The first time they can explain what PKU is when asked. The First time they take their own blood dot or measure and weigh their food.

The brave face we put on every time we go to clinic and meet with our PKU teams.

The PKU teenager who is learning not to be peer pressured or not to be ashamed of their PKU. They learn to embrace it as a part of them and dont let it hold them back.

The PKU young adult when they transition away from their childhood clinic and team and start attending the adult clinic.

Every time a PKU’er tries a new PKU food or formula.

The PKU women who wants to become a mom’.

The PKU Women who experiences a Maternal PKU Pregnancy.

The PKU women who is raising children that do not have PKU.

The PKU adult who are learning how to feed their families a regular diet and cook or bake regular food.

The PKU’er who is learning to manage their diet through school, work , travel, and life.

Every time we take a level. Or go for our annual PKU blood draws.

When we learn to bake and cook and count the PHE in everything.

When we go out to eat and dont cheat or take the easy way out.

When we dont give in to temptations and cravings.

For those of us who have fallen off track  and had to learn hard lessons.

For those of us who have fallen off and picked ourselves up again.

For those of us who constantly struggle to be compliant and maintain good PHE levels.

For those of us who just really hate this life and this diet but we do it anyways.

For those of us who want to give up or give in but try again tomorrow,

For those of us who dont let it break us. Don’t let it define us. Don’t let is consume us.

For those of us who have suffered high level effects and lost jobs, failed classes, failed relationships, lost hope, suffered physically and mentally.

For those of us who battle mental illness .

For those of us who each fight our own PKU battles daily.

For those of us who are trying, learning, pushing, accepting, and doing.

For those of us who walk this journey, whose life has been changed because of PKU.

For those of us have learnt and grown and developed skills because of our path and our journey,

For those of us who are a better person from learning and living with a rare genetic disease ,

that is PKU Strong.

I am not PKU Proud, I am not proud of a disease I was born with , that if their was a cure,  I would take it.  I am not proud I struggle , I am not proud that I fall down and get back up constantly. I am not Proud that I cheat and I eat things I am not suppoes to.  I am not proud that I do not have the willpower to stick to my diet 100 % of the time. I am not proud that I make mistakes and I suffer from high levels a lot of the time.

I am Strong because I dont give up. I am strong because I dont let it hold me down. I am strong because I dont blame my life failures on having PKU. I am strong because I use my voice to advocate for others. I am strong because I want to help people avoid my struggles and challenges.  I stand tall from the lessons I learnt and my past experiences with my diet and life.  I am strong because I have seen both sides of the coin. I am strong because I have had bad high levels and suffered. I am strong because I have been very healthy with great levels. I am strong because I grew a life , safely and healthy .

I am strong because I keep going. I am strong because I dont give up. I am strong because I use my voice to improve the quality of life for others.

I am strong because I live this life. I have gone to school, I have changed careers, I have traveled, I have worked outside my home. I have a family, I have friends, I have a community. I have a team. I have a village. I am a mother. I am a wife. I am a friend. I am me.

I am PKU Strong.