After a rough time for our eldest daughter Janice (Jani), Ellie Elaine Stevenson was born by emergency caesarean section on Sunday 28th May 2006 in St John's hospital near where Jani, her husband Dylan (Dee) and four and a half year old son Luke ( the wee man) live.
My wife Audrey and myself had travelled to Scotland on the previous Wednesday and were on hand to help out and offer whatever suport we could.
Although she was four weeks early Ellie weighed over 5 lbs, which seemed not too bad - there were however some concerns even at that time. Ellie was not feeding too well, she wasn't too active and didn't cry. Staff kept re-assuring us that the problems were down to the fact that Ellie was premature and she would be o/k.
After a couple of days she was moved to the special baby unit and Jani and Dee took turns staying at the hospital feeding and looking after her.
Ellie came home shorthly after, much to the delight of the wee man, but there was still concern amongst ourselves as to Ellie's progress. Jani was exhausted - not only by the the birth but the added stress of worrying how Ellie would do.
Audrey and me delayed our return home as long as possible, but we had the added concern over our youngest daughter Alison (Ali) who was expecting her first baby at the end of June - we were concerned what effect the worry over Ellie's condition might be having on her, plus Audrey had to return to work.
After a lengthy labour, Ali gave birth to a baby girl, Hannah Eve, on Sunday 15th June - both were fine. We spent a few days with Ali and her husband Mark after Hannah came out of hospital, before heading home ( about 60 miles away)
We had a family get together in Londonderry at the start of August - the three gradd-children, mums and dads and Audrey's sister Sandra from England. It wasn't the usual light hearted gathering with plenty of laughs, but we tried to make the best of it - there were many tears about Ellie, her lack of progress and what sort of future she would have.
On Friday 11th August Jani received a telephone call from St John's hospital asking if they could bring Ellie in on Monday morning. We were all a bit stunned - we knew if they were required that soon there must be something seriously wrong.
Jani rang back to the hospital to try and get further information and the doctor seemed to be quite re-assuring, saying they wanted to carry out some more tests - our minds were working overtime - we were convinced that bad news was to follow.
I received a call from Jani at mid-day on Monday morning telling me that the wee lady had been diagnosed with a rare genetic disorder called Prader-Willi Syndrome - I was totally shocked - we knew something wasn't right, but never something like this. I had never heard of PWS, but from the explanation the doctors had given Jani and Dee, it didn't sound good.
I did my best to comfort Jani, but I was useless, i couldn't find the words.
When we finished our call I immediately went on the internet to find out more about PWS - that was a bad mistake. I nearly broke my heart at some of the articles I read.
One thing is certain, Monday 14th August 2006, was a day that changed the lives of our wee closely knit family - forever.
