In June 2021 Otto was born (our beautiful son!) and it was the beginning of a journey learning all about Sticklers; frequently travelling to appointments and a series of operations to support Otto in his early development.

Sticklers Syndrome, a genetic condition, is something we knew nothing about but were about to learn plenty. Some slight abnormalities were picked up during our pregnancy, and thanks to Great Ormnond Street genetic testing, we were able to start understanding what Otto would be born with and how we could support him as a family. Along the journey we have been able to access so many amazing services provided by the NHS, but in particular the continued support from Addenbrookes Hospital and the Sticklers Clinic in Cambridge; headed up by the very patient, calm and inspirational Mr Snead.

Thanks to the tireless research, consultations and cryotherapy from the team at Addenbrookes in Cambridge, Otto has been able to access annual check ups, be seen by the best staff in this field and receive preventative cryotherapy surgery to reduce the risk of his retinas detaching; allowing him to partake in activities along with his peers.

To support the work of Sticklers Syndrome UK I will be taking on 3 triathlons in the space of 1 month to raise the much needed funds for a charity that is very close to our hearts.

I will be challenging myself by completing an open water triathlon at Blithfield reservoir, something well outside of my comfort zone and which scares me a lot, along with two other pool triathlons in Matlock and Derby.

I hope to raise funds to support the continued research and support which is provided by Sticklers Syndrome UK; for families like us, who didn’t even know where to start with this under diagnosed syndrome.