Templepatrick teen Charlotte highlights World Down Syndrome Day
Charlotte Regan was born with Down Syndrome 14 years ago and hers is just one of millions of lives celebrated today as part of World Down Syndrome Day. Her father Mark tells Joanne Sweeney how his eldest child brings ‘magic' to his family every day
TEENAGER Charlotte Regan has been set a challenge today by the organisers of World Down Syndrome Day – that's to find out what she can bring to her community, if she gets the opportunity to contribute.
However, her parents Mark and Cora Regan already know what Charlotte (14) brings to their family: "pure joy".
The couple from Templepatrick were naturally blind-sided when they learnt that their first child had Down Syndrome.
However, shock quickly turned to concern for baby Charlotte, who battled serious health issues in the first year of her life. They later found out that Charlotte is also autistic.
Mark, a radiographer by profession who is now CEO of Kingsbridge Private Hospital (352 Group) in Belfast, tells his daughter's story:
"We didn't know that Charlotte had Down Syndrome before she was born and it was a shock. It wouldn't have made a lot of difference anyhow, other than to maybe get our heads around it in advance of her being born.
"In the intervening 14 years, diagnostic technology has come on in leaps and bounds, alongside a host of other blood tests which are now available to diagnose many of the most common genetic abnormalities, including Trisomy 21, which is the proper medical name for Down Syndrome.
"Both Cora and I were tested afterwards to see if we carried any genetic abnormality but that thankfully proved not to be the case. So I suppose Charlotte's situation was down to a random genetic mutation. As a result none of our other three children Sophie (13), Rachel (11) and Oliver (9) are affected in any manner whatsoever.
"Today, and quite ironically, Charlotte is by far the healthiest of our four children, rarely getting any regular illnesses such as colds, flues and infection.
That was not always the case. In addition to the Down Syndrome and autism, Charlotte had Tetralogy of Fallot, which most people will be familiar with as a hole in her heart.
"She had to take beta blockers every day from birth and the challenge was to get her to one-year-old so that her heart was large enough to operate upon with a greater degree of confidence in the outcome.
"During that year, if she became short of breath, she would turn blue and become very sleepy. She simply needed to be turned on her side and a few seconds later she would come round again but try explaining that to potential babysitters. For that reason she was rarely away from our side for the first year, unless grandparents looked after her for a few hours.
"We went to see a consultant cardiac surgeon when Charlotte was about 11 months old and he said that she was fit for surgery. But by that stage the waiting list was one year and there were no certainties around Charlotte making it to two-years-old. That was my first awareness of waiting lists in Northern Ireland. It would have cost us £20,000 for us to fund it privately to take place in a week's time and we wondered how we could ever manage that.
"Thankfully, I had Bupa Health Insurance through work, so when we called back to the surgeon's secretary, we were able to get her surgery within two weeks' time. That was my first insight into the importance of private healthcare in Northern Ireland.
"Charlotte left intensive care on her first birthday and largely speaking it was a huge success. She is monitored every year for cardiac issues and she will need valve surgery when she's an adult.
"We learnt very early on that you are fighting a system with markers that tells you what your child can't do, rather what they can do. Charlotte's siblings know her boundaries and limitations but they also know that each of them are themselves very different to each other as well.
"Having four children is great as I can see a real diversity in them all. We took them all to see the film, The Greatest Showman, in the cinema recently. One line from Hugh Jackman created a whole discussion at home, ‘Nobody ever made a difference by being like everyone else'.
"I suppose that sums up Charlotte in a nutshell. She won't ever be an investment banker, a lawyer or radiographer for that matter, but then none of those professions can make you 'laugh with them' like Charlotte does when she plays the same three notes on the piano, over and over for two hours and then smiles seeking applause at the end.
"She has the ability to make everyone laugh in the worst situations. That's the greatest gift. Something will set her off and it will be completely random. You can go into her room in the room in the morning and she just bursts out laughing. It's hilarious and sets you up for the rest of the day. She has a magic about her that when she laughs, everyone laughs. She's just pure joy.
"As parents, we also talk about the challenges Charlotte faces every day as she is non-verbal and doesn't sign with Makaton [a sign language]. However in her own way, she makes it abundantly clear what she wants and doesn't want – just like we all do.
"Charlotte is now 14-years-old and goes to Riverside School in Antrim but a whole new set of challenges looms for post-18 education. Where will she go that is age appropriate and accessible for her after?
"We looked around and I came across the NOW group (Nowgroup.org). They are a local social enterprise catering for hundreds of people just like Charlotte to ensure the needs of people with more complex learning disabilities are met across Northern Ireland.
"You may have seen some of their work in two projects they operate, the Loaf Café facing the Royal Hospital on the Grosvenor road, Belfast and the Bobbin café in the Belfast City Hall.
"I have nothing but praise for organisations such as Now Group and would hope someday to help them grow so that more people like Charlotte can reach their full potential."