Jamie and I are running the '2020 Virtual London Marathon' on Sunday 4th October as a husband and wife team for the charity ‘Unique’ 

Our daughter Niamh has an extremely rare (9 in the UK and 55 globally) single gene disorder called 'NAA10' also referred to as Ogden Syndrome. She is just 1 in 11million. 

At around 6 months we knew something wasn’t right as we inevitably compared our first child to her peers. At 12 months Niamh underwent numerous investigative testing to explain her global delays and at 2 years 3 months in August 2018 we received a much longed for diagnosis. 

Today, at 4, Niamh is globally delayed, she cannot talk and gets so very frustrated trying to communicate her needs and wishes. Everyday milestones which as a parent you assume will undoubtedly come, present a huge challenge for Niamh and there are no guarantees about her development so we just take each day at a time and fight for all of the support we can to help her on this unknown and unpredictable journey. Remarkably, at the beginning of lockdown in March, Niamh started walking and is astonishing us as she now stomps confidently around both inside and out! We never knew if the day would come and I can only describe it as THE best feeling in the world! 

When we received the diagnosis it felt like the bottom of our worlds had dropped out, a black hole, a physical pain which is hard to describe, knowing that our future as a family would not be the conventional one we had expected nor really knowing what it would look like other than an uphill climb. It makes you feel numb and helpless, completely alone and isolated as you grieve for the life you so wanted for your child.

‘Unique’ supports families at the start of their journey, providing networking, support and information about rare chromosome and single gene disorders, signposting families to where they can access help. 

We want to spread awareness and help ‘Unique’ to support more families like ours, so please help us in our fundraising efforts to smash this target for Niamh and other children like her. Niamh astounds us on a daily basis with her determination and fight, her effervescent personality and of course her infectious giggle, we love her unconditionally and would not change her for the world but she will undoubtedly need continued support from medical professionals throughout her lifetime. Let’s #shinebrighttogether #naa10warrior #teamunique 

Thanks for your support, it means the world 

Jamie and Nikki -Team Donohoe xx

Don’t forget to tick the gift aid box if you are a UK tax payer, the government will add 25p for every £1 onto your donation and it costs you absolutely nothing! 

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