Charlie's Story

25 July 2016


Charlie and his mother Janelle

Charlie is an inquisitive 3-year-old boy who loves to draw, play football, go to the park, all the things boys his age love to do. When Charlie was born he was diagnosed with ‘Microcephaly’ a rare neurological condition which causes the head and brain to grow at a slower rate than other children. The condition means Charlie has a learning disability affecting his learning and development, he has also been recently diagnosed with epilepsy.

Charlie has just finished a year at the Mencap Children’s Centre in Belfast, we talk to his mother Janelle about the difference this has made to Charlie and the difference Mencap has made to her family.

Janelle said: “I had an idea that Charlie might have a disability when I was pregnant, as my seven-year-old daughter Katie-Louise also has the condition, so I knew a lot about it. It was a 1 in 4 chance he would have Microcephaly. So when he arrived and they carried out the basic test of measuring his head he was diagnosed the condition. Looking at him I knew this, as his features were similar to Katie-Louise. We knew a lot about the condition and what we would need to do but it was actually more of a shock when you do know more.

After the diagnosis, when I was sent home from the maternity hospital, I knew what Charlie needed, because of my experience with Katie-Louise. The hospital did not give me that much support, if I did not know what to ask for with Charlie I would have been sent home with very little support. I mostly learnt via the internet through my own personal research. I was able to find out what the condition was, how it was caused and what could help.

My daughter Katie-Louise also attended the old Mencap nursery, so I knew the difference that Mencap could make to Charlie and the support we could get from them. The support has been unbelievable and does make such a difference.

Since starting the Mencap Children’s Centre the difference in Charlie has been mind-blowing. The new Centre built has provided Charlie with more room to play and express himself. When he first started he was a very timid little boy who did not venture out or play with other kids. He mostly stuck to himself and was very wary and scared of a lot of things.

At the Mencap Children’s Centre he has developed a bond with his key worker, who has really brought him out of his shell. He is playing with other kids and has made friends. When I take him to the park he now goes over and approaches other kids and wants to play with them and interact. This is purely because of the confidence the Mencap Children’s Centre has given him.

His communication has come on leaps and bounds as when he started at Mencap, he had no words, and it was more babbling and baby talk. Charlie first started saying a few words, and soon after he was coming home every day saying different words he had learnt at the Centre.

He is running about a lot more and his physical mobility has really improved, especially with all the physical therapies he gets on site. At the Mencap Centre Charlie gets to learn and experience new things every day. The Mencap team work on his sensory awareness, different textures, feelings and sounds.  Now at home he is out on the grass and playing, touching and learning as any kid does. That change is because of the centre and what he has learnt there.

The support that I have had from Mencap has been amazing, being able to speak to the key workers and find out how Charlie has been getting on has been great. Like how he got up and ran from one side of the room to the other, something like this is a big achievement for him and the fact that they have helped him do that. The help and support they have given me has been amazing, any concerns I have they sort it and try their best to support Charlie and the family.

It makes such a difference having all the professionals on site at the Mencap Centre, physio’s OT, speech and language therapists, even appointments with the main medical consultants take place there. Charlie sees the same physio, speech and occupational therapist every time, so he gets to know them and responds a lot better. Before Charlie started at the Mencap Centre I could be running to four or five appointments a day, pulling him from one place to another.  All the constant car journeys where very difficult and stressful on all of us.

The support for Charlie, what he has learnt here and at such an early age will help him so much more in the future; attending from two to three years of age makes a big difference when you see how much he has learnt. It will help him for the rest of his life, coming out of his shell, making friends, playing more, learning more. Having other kids around him shows him it is ok to do so many things he may have been scared of in the past.  I would tell other parents if you get the chance of a place at the Mencap Children’s Centre for your child, then jump at it, because this place and the staff are absolutely amazing.”

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