Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching out to some of the slightly older members of our community who know what it is like to grow up with a rare disease. By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
This time around, the letter comes from Kieran Bowerbank.
Kieran lives with 8p, a disorder involving his 8th Chromosome, and now works in a school helping children who have special needs.
This is Kieran's LETTER TO MY YOUNGER SELF!
Dear my younger self,
Over the years there’s been many things I’ve wanted to say to you, but it’s been great to see how you’ve turned those negatives of the condition into positives, overcoming all the hurdles you’ve faced along the way.
Having great parents around you all your life, has put you in good stead. Not letting a Chromosome 8 disorder hold you back in anything you've wanted to achieve.
Being born in ’96 was a good thing and maybe a bad thing. It was good, as parents didn't know anything of the condition then and got told to just take you home and see how you develop. From what I’ve seen that was not a bad a thing at all! Maybe parents would've loved some guidance like families today have, using the internet and social media forums gives the families to talk to one another and support each other with their children. Then again would it have shaped the adult I see before myself?
I have to say you have got better at talking about your Chromosome 8 disorder as you have gotten older. It was harder when you were younger as you didn't really understand what the condition entailed. But through your latter teens and adult years you've really helped so many families and spoken brilliantly about how 8p.23.1 deletion has affected you growing into the adult your today.
Even though hospital became your second home. You did not let that worry you!
From an early age you've done well! You might have missed a fair bit of education through those appointments and operations, having to correct things along the way, it never stopped you from achieving great heights!
Don’t get me wrong you had a few struggles, you baffled my class teachers when it came to exams. They couldn't work out, why you were so good in class but never could grasp exams. Some may say you were nosey and lazy, but in fact that was down to your lack of concentration that comes through having 8p and not fully reading those question properly. You may not have gain those very top grades but trust me you exceeded exceptions and went onto bigger and better things!
One of your best achievements to date has got to be, being able to drive. This is a great achievement, and you should be proud! With 8p there comes issues with coordination and driving involves a lot of that! Having your own car gave you that added independence to go and seek new challenges.
One challenge you did seek was living away and attending university!
Don’t get me wrong, you didn't have university too easy, and this is where you have struggled the most and needed more of a helping hand. You should not have felt ashamed one bit, as it was brave to admit you were struggling and to seek help through disability student services. That service got you through university, as they were able to organise your work, life balance leading to achieving a degree in Higher Education in Sports Studies.
You should be so proud of yourself! You are helping so many other 8p families as you are showing those families that even though they have children with 8p conditions, they can achieve so much. But equally letting them know that it’s the smallest achievements that mean just that bit more in life!!
Back in 2019, so much changed in your life! You gained one big new family, the best family any 8p hero could wish for! You had a great honour in going to New York and delivering a speech about your life to hundreds of 8p families. It was one experience that will stay with you forever, it was a privilege to not only share my 8p journey with everyone but to meet so many inspirational 8p heroes and families!
Now you've only gone one step further, you've found a job working 1 to 1 with SEN children at a school. It is like you've come full circle. You can now pass onto those children everything you've been through and learn along the way with a Chromosome 8 disorder. You will succeed and be a true asset to the whole school ethos.
So younger self, don't let anyone tell you that you can’t achieve anything.
You've overcome so many challenges and it has shaped you into the 25 year old you are today! You will get through it!
Written by Kieran Bowerbank as part of our "Letters to my younger self" series.
To get involved with the RARE Youth Revolution, and this series, you can email our youth coordinator James Brooks at email@example.com.
You can also find us on Instagram @rare_youth_revolution and on Facebook @RareYouthRevolution