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Bio: Grant Muller, a look at 4 generations with bpes

9/5/2017

4 Comments

 
Picture
Four generations of people with BPES: Grant, with daughter Caitlyn, grandson Oscar, and father Kevin.
Below is the first in a series of BPES Biographies.  Meet Grant Muller from the Fraser Coast region of Queensland Australia who is the Administrator of the largest BPES facebook group.  I’m excited he’s sharing his personal experience as well as coming from a family with many who have BPES. Thank you Grant!

Hi all, my name is Grant, and I have BPES.  My father also has it and he was one child of five who has visible signs of it.  Both my brother and myself have BPES, my brother has two boys, the eldest who has BPES and my wife and I have two daughters, the eldest who has BPES.  This daughter, Caitlyn and her husband Adam now also have a son, Oscar who has BPES. 

The fact that I have BPES has never formed part of who I see myself as nor have I let it dictate my life greatly and have always led my life and behaviour on the basis that I am judged on my performance and integrity not on my appearance. But I do know that I have to perform at a higher level than other people and prove myself to get people to look past the BPES aspect of my life, this is part of human nature for most people and I have had to throughout my career ensure I project my ability to ensure I am judged on ability not on looks.

To give you all a further background of my myself, I am from a farming family and my schooling years were the time in my life where it was most trying with a steady succession of being bullied and picked on until I learnt first of all how not to be a victim then secondly how to stand up for yourself.  Looking back on these years I think without this period I would not have become the person I am today and the life lessons learnt have held me in good stead through the rest of my life. 

​After I finished school and went through a progression of short term jobs then got a job at the local sawmill as a general labourer and proved myself through effort and accomplishments to progress to an area manager of the mill.  I then had the opportunity to progress my studies which led me to be the management accountant for the company.  I have now established myself as a senior leader within the company and lead a wonderful life.

I have always aimed at ensuring that in everything I do I excel and my extended family is a living example of this.  I met my wife Wendy when we were fifteen and we were married at nineteen, three years later we had our first child, Caitlyn, then two years after this our second, Tamara.  Caitlyn is now twenty-five with a husband, Adam and a young son, Oscar.

Having a condition such as BPES doesn’t define you as a person but it does influence the choices you make and the way you interact with other people, I have found throughout my life that when meeting someone new there is often that small glance that people give when they see something different.  I am now usually very forward with comments and discussions I have with people about BPES and find that once people are aware of the condition it seems to stop the sideways glances they seem to give.  Having to deal with peoples glances and comments about kids is harder and while I can accept comments from other children to an extent, the comments from other parents is harder to accept.  There have been times when my kids were young where I didn’t handle this very well, now I am a granddad and maybe mellowed a bit I find I look at these as opportunities to educate people or other kids though this can be really hard to do sometimes.  I don’t know if there is a right or wrong way to talk to people about BPES but when I get the opportunity I do try to do this in a positive way.  All you can do is reinforce to your children/grandchildren that BPES doesn’t control your life and while you may have to try harder than other people, you know that you are judged on your achievements not any other factors.
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Grant's family: Caitlyn Nicol (Muller), Adam Nicol, Wendy Muller, Oscar Nicol, Grant Muller.

*If you would like to share your story on this blog please contact us!
4 Comments
Leanne
9/9/2017 01:25:21 am

Hi there.. .thanks for sharing your story:-) we have a son Ethan age 14.5 wurh bpes he's the first and only one in our families with it:-) he's always been such a happy cheerful boy but he's struggling the past few years pretty much since starting high school but worse this year, he's not as bubbly and happy as he used to be and we know its an age thing but he admitted he thinks he's ugly and hates his scars from his surgery, in his crease and on the side of his leg where they took the fascia lata...weve continuously told him how handsome and unique he is but he's not feeling that way atm:-( he asked to see a counsellor....its not all about his eyes but high school is such a stressful time trying to find your place and fit in...any advice? Thanks again:-)

Reply
Grant
9/9/2017 01:24:00 pm

Hi Leanne, as I said in my blog school was the hardest period of my life with the stresses of learning and your self opinion on top of that. I think people are our own worst critics and we are harder on ourselves than most other people. Most of us with BPES know we are never going to win beauty contests but in saying that you have to learn to love yourself for who you are and be proud of your achievements and this is the mindset that you have to strive to achieve. I'm afraid I don't have any silver bullets for you in achieving this but I can only hope that Ethan will find his place and start to enjoy this short time of his life. Wishing Ethan and your family all the best in the future.

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Lynda Bruozis
11/15/2017 10:09:43 am

Hi Grant, I am 63 years old lady and suffer with this condition. I hated it growing up looking different and the operations were awful. I have accepted who l am and learnt to live with it and have been lucky enough to be married for 35 years to a man who loves me and has never been bothered about how my eyes look. My only regret was that I couldn’t have children, having lots of nieces, nephews and godchildren has helped me through the sadness of not having any of my own. I have always thought there are people a lot worse off then me so try to enjoy what I have, life is to short for regrets .

Reply
Grant
11/18/2017 09:23:03 pm

HI Lynda, thanks for the comment. I must say I used to use the word 'suffer', but no longer use this term and now just say 'I have BPES'. I have come to terms with my appearance and have led a wonderful life and have an amazing family. I can't imagine what it must be like to have type 1 and can only sympathize with you in regard to this. You are correct in your last sentence that there are a lot of other conditions and illnesses that would be much worse to have than BPES and I too enjoy my life and don't worry about the looks and stares if I get them. Age seems to make you resilient to a lot of stuff that used to affect you deeply when younger. All the best, Grant

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