‘Down Syndrome doesn’t define Evie’
Schoolchildren all over the world donned two odd socks yesterday, to support World ‘Down Syndrome Day.’
And one local nursery school had a very special guest to raise awareness of the condition.
Evie McDonnell is 18 months old and while she has Down Syndrome, it does not define her.
Yesterday, she visited the pupils at the Academy Nursery with her mum Laura before attending a party organised by the Foyle Down Syndrome Trust.
Laura didn’t know her beautiful baby girl had Down Syndrome until she was born, as it had not been picked up in any foetal scans.
“As soon as I looked at her I knew she had Down Syndrome. It was a lot to process at the time. I wasn’t worried about us as a family dealing with it, but I was concerned about other people’s perceptions.”
Laura, who is a Primary One teacher, works with children who have special needs and has a ‘special connection’ with them.
It is particularly important for Laura,and her family, that people see Evie first and not the Down Syndrome.
“Life is different to what we expected it to be, but it is better. We live for everyday and know that anything can change in a minute.
We only started living like that when Evie was born. We don’t worry about the small stuff anymore.”
In the days and weeks following Evie’s birth, the McDonnell family went through a particularly traumatic time. Laura had to have surgery and her beloved grandmother, who Evie is named after, passed away.
They also received the devastating news that Evie had holes in her heart.
Evie was transferred to the Royal Victora Hospital and had major heart surgery in London when she was just a couple of months old.
“Once we found out about the heart problems, that took over. We weren’t worried about the Down Syndrome because we know that we are strong and have a good family, but we were worried about her having congenital heart disease and getting that fixed.”
Evie spent just 13 nights at home between birth and the surgery and even spent her first Christmas in hospital.
Laura and her husband Vincent, also have a five-years-old son Callum and it was very tough to be separated from him.
“Obviously Down Syndrome has it’s down sides, but Evie is the person that she is and she makes our family better. Once your child has been through heart surgery, every other day is amazing.
“It is one of those experiences you don’t want to go through, but you meet so many amazing people along the way. I feel like we have another family in our lives now, and have extra support and extra friends.”
Laura has been able to connect with other parents whose children have Down Syndrome through the Foyle Down Syndrome Trust.
“Evie goes to Foyle Down Syndrome Trust three times a week and they are amazing. She is learning so much through play therapy and music therapy.
“She is always smiling and she lights up any room.”
Evie also has to attend numerous appointments with physio, occupational therapy and speech therapy, because she is tube fed.
Laura said she has not had any negative experiences in Derry and people are always so eager to stop and chat about Evie.
“She was born with Down Syndrome she has it but it doesn’t define her.
“She is Evie and she can have fantastic life and we will do our best to give it to her.”
The family have fundraised for the Foyle Down Syndrome Trust in the past and Vincent is to climb Mount Kilimanjaro later this year.