”I’ve noticed some characteristics” our midwife gently said as we were cosied up on the sofa bed about to turn on a Christmas movie.

“Characteristics?….Down Syndrome, he must have Down Syndrome” I thought as my mind frantically scanned through everything I knew about Down Syndrome, which wasn’t much.

“Heart defects, is his heart ok?” Was the only thing I could think as I stared into those beautiful navy blue almond shaped eyes that seemed to hold the whole universe in them.

“Yes, I see it now” I said, and within 3 hours of being born we were off to the hospital for his first echocardiogram and to monitor feeding. We had no idea what the future would hold, but we did know this little boy, our protected mermaid boy born in his sac, was so loved already and we would do anything it would take to help him thrive.

When you first get a diagnosis it is all the unknowns that create the most fear. We were very lucky to have a very positive experience with our medical professionals in those early days, but we still received a list of all the risks that come with having a Trisomy 21 diagnosis. Thankfully one of the nurses handed me a flyer and said “don’t google, just go to this website”.

The flyer was for PADS, or Positive About Down Syndrome. I joined the Facebook group for new parents of children with DS and immediately found myself engulfed in posts and stories of children just like Ro from parents just like me. Parents who made what we were going through seem “normal” and manageable although challenging. When we got home from the hospital we were met with a welcome pack from PADS with all the information we needed about therapies and early interventions to help our boy thrive alongside a book of positive stories from families and a hand knitted hat 🩵 Over the past 14 months PADS has provided support for any challenges we were facing, resources, trainings and most importantly community. On top of supporting parents and families PADS also works with maternity wards to change outdated ideas and language around DS, and with early years providers. The PADS support group is also how I was connected with our local support groups and first connected with a dear friend for me, our boy and our family. PADS has been a huge part in making this DS journey the positive experience that it has been so far.

This is why I have chosen to run the London Landmarks Half Marathon to raise funds for this wonderful organisation. If you know me you know I am NOT a runner so this will be a massive challenge for me, but I could not think of a more worthy cause. So friends and family if you can spare anything at all, please help me support PADS and the incredible children and families it works to support. If you have any questions about our journey, the charity, or Down Syndrome in general then please don’t hesitate to ask.

Let’s #runforro

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