Evan WilliamsBirmingham, England

Hi, I’m Julie, I live with my husband and three children. Our story is a little different to most. My youngest child having a diagnosis was almost expected, due to our ages (44 for me and hubby was 61), and also having had a high chance of Down syndrome in my pregnancy with my daughter, almost 12 years previously.

I came home from work one day to find a midwife on my doorstep with the results of “risk” of 1:156 chance of Down syndrome. Elysia was born 6 months later and the midwife announced, I see you’ve been checking, she doesn’t have DS. Naturally, there was a (very small) sigh of relief at that moment and it was never mentioned again.

Fast forward 11 years and we were pregnant again! It was week 14 I had the phone call – a ‘risk’ of 1:5. I was offered further testing and again I declined. I wanted a baby and that’s what I had. No blood test would ever change the love I already felt.

Evan was born at 38+1. After a super speedy (for me) 2 hour 15 minutes delivery. He was born in the caul, he was so eager to get here, which is supposed to be lucky. Evan arrived like any other baby, bluish grey but soon perked up and had an apgar score of 9, exactly like his sisters. He was extremely floppy but I just put that down to him being tired due to his speedy birth. Then we were left alone…

An hour later a nurse entered the room with a doctor in tow. He looked rather nervous so I guessed what was to come, like I said before, it was almost expected. Now here’s the thing, he told me his suspicions, that Evan had a couple of markers but was also missing a few. He never once said ‘I’m sorry!’. He never once looked at us with pity, he never once listed the things that my son might never do and for that I thank him. We had a very positive experience but others aren’t so lucky and that needs to change!

Six years on would I change a thing, hell no! I love our new found community. They say it takes a village to raise a child and our village is immense. Life is better than before, you appreciate things more. You stop and you take time to smell the roses, you have to. Each milestone reached is one hard fought for, both by you and your child and for those reasons you appreciate it and celebrate it more.

I’m glad you’re here to follow our journey with life with Down syndrome and a very possible extra diagnosis of Autism just to mix things up.

I do believe Evan’s extra chromosome is full of magic and that’s why we need to Make Chromosomes Count!


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