Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)


My first SOFT weekend – Moya Verling


 Our little boy Fionn was born sleeping on 4th May (my birthday!) in 2013. It is strange to think that 2 years have passed and yet sometimes it feels like a lifetime. Since getting the diagnosis in January 2013 life has evolved in many ways, we are different people, we have a stronger relationship, friendships have evolved and I find myself in conversations and situations that I had never previously imagined – I am not sure where we got the strength but with the support and love of family, friends and complete strangers we are still here today!


And it is those complete strangers in SOFT Ireland who are now friends that have probably had themost impact on life in the past 2 years, from a private on-line group where I can chat and ask any questions, to the website which gave me so much support at the time of the initial diagnosis but I will never forget the relief I felt when I made that first phone call to the Freephone number and Alma picked up. It was a weight off my shoulders to speak to someone who knew what Trisomy was but more so to speak to a mum who had been through the journey that we were facing into.

Over the past 2 ½ years, my ‘SOFT’ friends have been on the other side of computer, at the end of an email and at the end of the phone – they have supported me so many times with advice and support, sharing their experiences and although it took me almost 2 years I was delighted to finally make it to a SOFT weekend this year. I will be honest and say I wasn’t ready to go before this; I’m not sure if it was that I didn’t want to go without Fionn or that I felt more comfortable bringing Ella, Fionns little sister who we welcomed into the world in December 2015.

Myself and my mum headed up to Bloomfield House on Saturday, (April is not a farmer friendly time so Tom unfortunately wasn’t able to travel!), I figured one night would be enough for my first SOFT outing, I was a bit anxious, would I recognise anyone? How would I know who was there from SOFT? Lots of questions were running through my mind, but straight away I saw the committee members in their red SOFT t-shirts in the lobby so I went over to introduce myself.

That evening we had dinner in the hotel, it was lovely to sit down for dinner and to share stories with other members about their babies, it was really lovely to chat openly about Fionn, for people to be so interested in him and to be part of a really caring group. One little child ran up to a mother during the dinner to say that they had met another little boy who also had a brother living in heaven – it was so lovely and I hope that Ella will grow up with this being normal in her life too. There was awards for some of the members living with Trisomy, I was blown away and in awe of them, Jamie was up to me straight away to introduce himself and wondered if I was going for a boogie on the dance floor later!

Wonderful people and their families are an inspiration, I’m sure it is not an easy syndrome to live with, but positivity reigns strong in their worlds. Sunday morning we all gathered for a balloon release, people read poems and shared special memories – itis lovely to have the families involved in any way theywanted, parents, brother and sisters anybody that wishedto participate were welcome.

The balloon release itself was emotional, so lovely in a way to think of Fionn catching his balloon but so hard to think of how unfair it all was that he wasn’t here to play with his balloon and his new little sister. I came away from the weekend with a lovely feeling of peace, I’m not sure how to describe it but in the midst of the new arrival of his little sister life was so busy, it was so lovely to be immersed in the SOFT world for the weekend





Baby Fionn Thomas Power

4th May, 2013

(Born Sleeping)

“There is no foot so small that it cannot leave an imprint on this world.”

Our sincere thanks to our wonderful friends & family who reached out and supported us & our families on our journey with Fionn. For the cards, letters, texts, chats, visits, prayers, mass offerings, thoughful gifts and delicious dinner deliveries… the support and love we received over the past 15 months have brightened up the darkest days.

Although the photo shows how small Fionns foot was, his imprint on our lives and the lives of those around us is immeasurable.

Love from Tom, Moya & Our Little Angel Fionn.