Do it for Mencap! A Mencap Story - Sophia and Eamon
Sophia has Cornelia de Lange Syndrome, which is a very rare genetic disorder causing severe developmental anomalies affecting the physical and intellectual development of a child.
There was no indication of any problems before Sophia was born, but we knew very quickly there was a something wrong. It was a huge shock to Sophia’s mother Emma, as this was her first child, it was a very scary, lonely place to be.
Sophia’s condition was diagnosed very quickly, as one of the doctors recognised the symptoms and confirmed the diagnosis as Cornelia de Lange Syndrome. So the family had some idea what to expect, but we did not know how severe the condition would be and doctors always prepare you for the worst case scenario.
It was a very worrying time, as the family did not know if Sophia would be able to do anything, such as walk, talk or interact with others, we just did not know what the future held for Sophia.
For the first year Sophia was constantly in and out of hospital, as her low immune system meant she caught every infection going, plus there was several operations to help her eyes to open and to have a tube fitted for feeding.
We knew about the work of the Mencap Nursery in Belfast and the medical team recommended that we try to get Sophia a place there, as Sophia has a learning disability and developmental delay. We knew it was very difficult to get a place as so many people wanted to get their children into the Mencap Nursery. We were very lucky that Sophia got a place early, which meant she would have two full years at the nursery.
On our first visit to the old Mencap Nursery, you could see the building was not ideal or in the best condition, but we knew of the plans to build the new Mencap Centre. But you could see and feel the love and care of that place and the devotion of the staff to the children. You could just feel the loving atmosphere, it really was something we felt straight away and the work of the staff was excellent.
Before attending the Mencap Nursery Sophia had no real social interaction with other children or any other people and could only lie on the floor with very little movement, almost in her own world.
Now she has learned to sit up and interacts with everyone, moving about the room by what we call the bum shuffle, shuffling around on her bottom. The best thing is that Mencap have her in a standing frame which she can push around the room and walk, something we were told she would never be able to do. She now interacts with all the other children and is always exploring the nursery room, when she first went into the new Mencap centre she soaked it all in, looking around every inch of the room.
Sophia has become an independent and contented child who is always smiling. She is a very happy smiling, laughing little girl and the Mencap Centre has made all the world of difference to Sophia and the family. I think these children deserve the very best and they really have the best in the Mencap Centre.
For more information on the work Mencap Northern Ireland do please follow the link below;