Milly Grace
Born 10/31/03
Written by Katie Allen, Lancashire, England

Our beautiful daughter Milly Grace was born on 31st October 2003, the 1st Halloween baby.  She was very unsettled for the first six weeks but we put this down to colic. At six weeks we noticed that Milly didn't seem to be focusing and had very shaky eyes, so we took her to the paediatrician who said that she probably had delayed visual maturation and was then referred to the eye specialist who didn't appear to be very hopeful that her sight would improve. 

Milly at Play

Then as Milly got slightly older it became more apparent how floppy she was, struggling even to look up and after another visit to her doctor Cerebral Palsy was then mentioned as a possible cause, of course we were devastated. Further investigations were done including lumbar puncture, MRI scan, skull xray and various blood tests.  At one year old Milly received the diagnosis of CDG type 1a.

Milly has never been a poorly baby, has always thrived and we feel very lucky that she hasn't had alot of the complications linked with the condition.  She first smiled at about 5 months and this is when she began to develop her eyesight, which felt like a miracle to us, she has always eaten very well although wasn't ready to be weaned till about 7 months and this took a while.  Milly is now two and a half and has just learned to sit independently, is self feeding (messy but great) and has just started to say a few words and her understanding is incredible.  She is very strong minded, knows exactly what she wants (and doesn't want), and is the happiest child.  She is cheeky, funny, naughty, full of energy & wants to learn new things all the time.  She is a child with a big personality who has so much love to give, to everyone.  Milly has lots of favourite things but books are what she loves the most, she can sit there for hours with her books, she also loves making things,  I firmly believe that it is vital for our children to express themselves in every way they can with songs, art and books.

Milly at the Beach

Milly currently goes to a special needs centre which is local to where we live but we don't feel that she receives the intensive physiotherapy that she so desperately requires so I am looking for alternative assistance in the way of conductive therapy which offers a more intense programme and the therapists are more informed about this particular condition.  I certainly get very frustrated at having to explain the condition over and over to all the different specialists as I'm sure all us parents do.  Milly also goes horse riding and swimming once a week which she adores(they call her the little mermaid).

So it has been a tough couple of years but I can't imagine my life without Milly Grace, she completes me, I don't feel angry any more you just have to get on with things and take each day at a time to enjoy your children.

eff: 05/14/06