On 5th October 2011, Shay and Finn Guihen were born. Long awaited and highly anticipated – with bets laid on the likelihood of 2 redheads (as both of us were ‘lucky’ to have red hair). No bets on Pfeiffer Syndrome though – a genetic disorder occurring 1 in 100,000 births, which caused an undevelopment of the midface and the skull plates to fuse prematurely causing pressure on the brain that would be fatal if left without surgical intervention.
Finn had to be resuscitated and then intubated as he could not breathe and he struggled to hang on to life for the first 6 weeks. Shay seemed to be stable.
But at just 6 weeks old both boys had their first life saving operations – on the same day, at the same time. These were the first of 10 operations to date.
We looked up one day and it was Christmas. Shay deteriorated and we were told that it was now about survival. We nearly lost him.
We looked up again and it was Easter – they were getting stronger despite having had 3 brain surgeries, 2 tracheostomies, 2 skull surgeries, 1 nasal and 1 stomach surgery.
When a friend of ours, Thomas Quinn, mentioned to Dermot that he and a few others were thinking about organising a social event and wondered if it would be OK, we were blown away. Would it be OK?! Was he kidding? The best way we can describe what this meant to us is to put you in our situation.….
Our newborn twins were seriously ill and not expected to survive. They were undergoing major operations at a rate of 1 a month - all of them essential to survival.
Our choice was to work or be with our babies ….We made that choice and our income simply dried up.
We were told at Christmas that life expectancy was approx 12 months. We knew then that we could not make a choice to work for the foreseeable future.
So, to Thomas’s question, we said simply “thank you”.
On 6th June Shay and Finn each received a huge cheque along with an event book listing all those involved and who had donated on the night. We sat and read through it, our mouths open with disbelief. We received many envelopes with donations before and after the event along with cards and messages of good wishes.
We will never be able to get to thank you all personally and so we hope that we can reach you through this paper.
We are truly indebted to the committee who organised the event and made it happen. The famous 5 are; Thomas and John Quinn, Patrick Noone, Micheal Henessey and Damien Mcabe.
You really are the Movers and Shakers and we hope that you were not too harsh on duties for the wonderful money collectors who rattled and shook buckets at the Dowra and Drumshanbo marts – namely Breda McLoughlin, Patrick Noone, John Quinn, Damien and Caroline McCabe, Immelda McCabe, Joe Noone and Peter Matimoe.
Thank you to the musicians who gave their time and talent to draw people to a lively night of entertainment; John O’Dowd, Sean Martin, Seamus Sweeney and the Rocky Mountain Rangers.
To the ticket sellers who twisted arms and persuaded ‘til they could persuade no more - thank you. You are too many to name.
Thank you to Ann Roddy of The Harp & Shamrock Bar in Keadue for providing the venue.
We know that Stephanie McCabe managed to secure a signed Westlife picture which was bought by Ann Roddy – amazing contacts Stephanie. And amazing taste Ann! We also know that Fiona Flynn managed to get hold of a Shane Long Ireland jersey which was bought by Murtagh’s Bar – thank you.
To Oonagh Sutherland (Kelly) who was incredible to us – many, many nights we arrived home late, tired and hungry from the hospital, to find cooked meals in the porch. Oonagh has spoilt us and the boys with incredible acts of kindness.Thank you Oonagh for your nourishment in so many ways.
To Emer Casey, who has been our rock and constant companion who has lived this with us and who also kept us going with dinners in the porch. Thanks Emer for your strength and love which shines so brightly for those who know you.
To Paula and Joe Casey who drove up from Leitrim to see us the night of the boys first operations - we have never been so delighted to see friendly faces as were that night. We were so grateful for your support.
And finally to the Leitrim Observer and each and everyone of you that contributed to the event, thank you.
We can only hope that one day Shay and Finn will be able to express their own thank you.
Denise, Dermot, Shay and Finn Guihen.