This week’s blog was written by Caroline Olshewsky, a passionate advocate and mother. Her youngest son, Noah, was born with ARID1B-Related Disorder.
Caroline has worked in the charity sector for over 15 years and is a Founding Board Member of FAR – Foundation for ARID1B Research.
This is Noah – my beautiful rare-disorder boy.
His story and my story will be very similar to many of yours.
How my life was changed by this small person and one piece of paper with seven small letters on it. “ARID1B-RD”.
How, since our diagnosis, we as a family we have cried and grieved and laughed and loved, worked our way through what has often seemed like an endless list of doctors and specialist appointments – and started to learn how to begin to live a life that we had never planned.
We know as parents and carers very early on that a diagnosis (or a lack of one) will change our lives.
But I had not realised how much it would change me. How very lost it would make me feel. How isolated from even close friends and family I would feel. How it would change what motivates me.
How, with all my focus going into keeping my family moving forwards and afloat, anything for me was falling behind.
And then I read a post from a parent with a son with the same disorder, asking if any other parents wanted to join him and see if together, we could try to develop treatments for these wonderful children to help them live their best lives possible.
I replied straight away and have not looked back.
I am now delighted to be one of six founding Board Members of FAR – the Foundation for ARID1B Research and part of an international community of hundreds ARID1B-RD families stretching around the world.
Through volunteering with the Foundation, I have met the most amazing people – families from all over the world, amazing scientists who want to use their expertise for our children, and the fearless parents of other rare disorder charities that have been pioneers in their fields – and realised what we can achieve together.
At the Foundation, thanks to the amazing community of families, we have now launched two research projects, with more in the pipeline.
While I hope beyond hope that there will be a treatment one day that allows me to hear Noah’s voice, I know that even if it doesn’t happen for Noah, by working together collectively as parents and carers and families, we will drive the search for treatments forward together that will help other children – and that as a FAR family we really can go FAR for all our ARID1B children.
Thank you, Caroline for sharing your guest blog with us. We hope you enjoyed reading it!
If you’d like to write a guest blog for Beacon, find out more about sharing your story.
