This is me….
… Alison Hawkins. 28. Living in Lincolnshire in the U.K. and I’m outnumbered by boys. I’m a mami to Elijah & dog mummy to Chubsy the pug and Herbie the Frenchie.
On Monday 22nd January 2018, we got the devastating news that our beautiful son, Elijah, had been born with the condition Congenital Disorder of Glycosylation type 1A. This was completely unexpected, scary, & heartbreaking. We were told that we couldn’t be certain of what kind of future and what kind of life Elijah would now have. Days are now a whirlwind of physio, hospital appointments, blood tests, medication, scans, and a butt load of meeting specialists and visiting the Childrens ward – but I wouldn’t have it any other way.
I’ve decided to write this blog, to give a brutally honest account of what it is like having a baby born with CDG – the good, the bad, the ugly. I hope that whoever you are reading this, if you have a baby that’s just been diagnosed with CDG that this blog gives you some insight; maybe even hope that our beautiful babies are just like every other, just with a slightly more difficult journey and start to their life. If you’ve just stumbled onto this page with no knowledge of CDG – very much like us before that dreaded day, then maybe you might learn something new about the very complicated and scary world of the condition CDG and what life is like raising a child born with this very rare disease.
To Infinity & Beyond 