As every parent with having a child or baby diagnosed with CDG knows, it’s a super scary time. We had a lot of questions that more often than not got unanswered. It’s no ones fault, it’s just unfortunately no one knows the answer.
If you’re anything like me you’ll spend a lot of hours scrolling through google, page after page, hour after hour trying to find something, anything, positive to latch onto because you’re terrified of the unknown. Unfortunately, as CDG is so so rare, I really struggled with finding anything that could give us hope or any sort of peace of mind. As I couldn’t find the positive I was looking for and needed, it often left me in a state of tears, feeling angry and frustrated. I now rarely search on the internet for anything linked to CDG with fear and anxiety of what I might read next.
However, I’ve since been directed to a couple of really great sources and support websites for parents with beautiful children like ours who suffer from CDG. I’ve linked them below in the hope that if you’re in the same place that I was, and often still am, these sources are able to help you and give you support in a time you need it.
I found this page incredible. It’s a private Facebook group for parents with babies and children who suffer from every type of CDG. There are so many different stories on there, sad, uplifting, & positive and the parents are so supportive of one another. If I’ve asked a question, or asked for a opinion, I’ve had so many replies from every part of the world. No one judges anyone. No one shows any kind of malice or negativity. This page honestly was a lifeline for me during the first few weeks of us finding out about Elijah’s CDG1A. It was an amazing outlet for me and genuinely the best source of information I could ask for. I can ask Dr. B so much and he will give me a really great, truthful, scientifically backed answer but these parents and families live with CDG every single day so they can give you a really honest & personal account of every situation.
National Charity supporting those with CDG
This website is a great source of information run directly by parents of affected families to provide a support network for us in the UK. Although there isn’t as much interaction on this site as there is the Facebook group linked above, I love the community part of this page where you are able to read the story of other children going through what Elijah is going through. These stories are so inspiring and give me hope with Elijah even on the worst days.
I hope these two pages help with anyone who is feeling a bit lost after a diagnosis of CDG within their family and I hope that soon I’m able to add more. I truly understand that it is a terrifying, heartbreaking time when this sort of diagnosis is made, but if Elijah has taught me anything, it’s that he, (like all the other CDG babies and kids out there,) is a tough cookie and it’ll take more than a disorder like this to bring him down.
To Infinity & Beyond 