'˜Our Down's Syndrome son brought us all so much love and happiness'

So although the recent programme ‘A World Without Down’s Syndrome’ divided opinion nationally on new screening for the condition, for Kathryn and Portadown-born Luke there is no doubt - their world was enriched by having their son.

The couple lost 18-month-old Leo almost two years ago due to a heart defect, and it is only now that they feel ready to celebrate his life.

With the help of family and friends, they have organised a Christmas Snow Ball in aid of the two charities that supported them - Lurgan-based Down’s and Proud and the Children’s Heartbeat Trust.

Kathryn said, “We wouldn’t have changed a thing about Leo, he was so smart and brought us all so much happiness. Leo changed our lives in a way I could never have imagined. He brought out the best in us all and filled us all with so much joy.

“At times I looked at him and thought how lucky we were, that we were blessed to bring him into this world. Luke and I could not have been prouder of our wee man, and the thoughts of him never have existing, after knowing how much love he brought us and got in return, is frightening.”

The Christmas Snow Ball will be held in the Bannville House Hotel, Banbridge, on Saturday, November 26 from 7pm to late. There will be a champagne red carpet arrival followed by a three-course meal, with music from Cora Kelly and Daniel Duke, who featured on The Voice.

It will be followed by a raffle and auction, and the night will finish off with fun and games with DJ Oggie. Host for the night will be James Dunbar.

Kathryn said the response to ticket sales had been “amazing” with almost 300 sold.

Leo passed away in the Royal Victoria Hospital while awaiting heart surgery in London to correct his AVSD (atrio ventrical septal defect).

Said Kathryn, “Luke and I found at our 20-week scan that something wasn’t right with his wee heart and we were beyond shocked. The diagnosis of Leo having Down’s Syndrome was also a huge shock, and it took me a couple of days to come to terms with the news.

“With the programme recently on a World without Down’s Syndrome, I just could not imagine a life without Leo and now we find ourselves in this situation, but not by choice. We do anything to have him here with us still, and our heart breaks every day that goes by without him.

“Leo was such a happy and lively little boy. He was hitting all his developmental milestones really well. He started clapping his hands one night to Pharrell’s song ‘Happy’ and that will be a memory I will always cherish. He could show you where his feet were, his lovely hair, and wave bye-bye.”

When Leo was born, he did much better than the doctors had expected, and was allowed home after just a week.

From then he had regular three-month check-ups at the Royal. As was expected with his condition, Leo had fluid around his heart, but apart from that he continued to thrive.

At a year old Leo was put onto the waiting list for heart surgery, but he developed a chest infection and unexpectedly went into a downward spiral from which he didn’t recover.

Leo passed away a week before Christmas, with hundreds who attended the funeral service wearing bright colours to celebrate his life.

Since then Kathryn and Luke, who live in Banbridge, have had another baby, Charlie, born on February 18 this year. Said Kathryn, “Charlie has given us a reason to go on again, but will never replace Leo. It was a huge relief when Charlie was born healthy and well. Charlie will grow up knowing Leo and knowing that he has a big brother in heaven.”

The family received invaluable support and love from both Downs & Proud and the Children’s Heartbeat Trust. Said Kathryn, “Luke and I still feel very much a part of the Downs & Proud family. Both charities do such amazing work and the proceeds raised will be split equally between them.”