Before our beautiful Orin was born, we knew he would change our lives, but little did we know exactly how much, or how important SMDSSG would become to us.

Orin was born at 36 weeks via semi-emergency c-section, and within seconds of meeting him, we spotted the tell-tale signs of Down’s Syndrome. Long flicky tongue, beautiful almond shaped eyes, flattened nasal bridge (aka cute button nose!)… we just knew our baby boy was special.

About an hour after we’d been in recovery, the midwife who had been looking after us brought over a junior doctor who very gently started breaking the news to us that Orin was showing some of the physical markers of Down’s Syndrome. I think as far as receiving news like this goes, we were fairly relaxed about it and just wanted to take each day as it came, and try not to jump to any outdated conclusions about what life would be like for us now. I won’t lie, the first few weeks after Orin’s birth were a rollercoaster of emotions (and unhelpful Googling!) but I know that the world is a much kinder and more inclusive place than it ever has been before, and everything happens for a reason!

At around 4 weeks old, Orin went for a ‘routine’ cardiology scan, which revealed that along with his extra chromosome, he’d also been hiding two moderately sized holes in his heart - an ASD and a VSD. The bigger of the two would eventually require intervention to close, and so in late November 2023, Orin underwent open heart surgery to repair the VSD.

SMDSSG have been such an amazing source of support for us over the last few months whilst we’ve been going through some really tough stuff! Mum & Orin first started going to the preschool group when he was just 10 weeks old, and they immediately felt so welcome and part of the group. Along with monthly 'Chatterbox' sessions, it’s enabled us to meet other parents with little ones who have gone through a similar journey to us, and it’s so good to just sit and chat over a brew with people that ‘get it’! Not even necessarily talking about DS related things, just normal chit chat but knowing that they also have thoughts about heart surgery, speech therapy, physiotherapy, hearing tests, occupational therapy, EHCPs (and all the rest!) whirring round their heads too just feels very reassuring.

Our eldest Elodie has also had some great opportunities through Chatterbox, learning Makaton through fun at Sing & Sign sessions which will help her communicate with her little brother in the coming years is just one example!

Straight from the get-go we have been surrounded by love from friends and family, supported in-person and online by SMDSSG and had a team of health professionals put together - not just for Orin but for myself, Lizzie and Elodie too. We feel so lucky to have such an amazing bunch of people all here to support us as a family and to ensure that Orin reaches his potential, and I have no doubt that he will, but that can only continue with support from people like you!

I, along with my two brothers, Declan and Finlay, will be running the Manchester Half Marathon on the 26th May 2024 in aid of SMDSSG to not only show our appreciation for the support we have received, but also to help to ensure this fantastic support network can continue for those who gain so much from it.