admin – Zellweger UK

Jakes Mammoth cycle from Land’s End to John O’Groats

Jake has undertaken a monumental challenge to cycle the entire length of the UK in 12 days of wild camping, to raise much needed funds for Zellweger UK in honour of his nephew Harry. Harry is the son of our very own fundraising coordinator Regitze, and is also affected by Zellweger Spectrum Disorder. Regitze even joined…

Fed is Best- Not Breast!

We had issues from the get go with Teddy feeding- or not feeding as the case may be. As I have mentioned in a previous post, I tried to breast feed- he didn’t once feed from me and I soon learnt it was nothing personal 😉. Whilst in hospital after Teddy was born, I tried to…

Teddy’s Treats

You know those people who are genuinely nice and good? Like if you cut me open, you would probably find a bit of green slime and a few cobwebs; but if you cut these people open, it’s all rainbows and butterflies. Well let me tell you about them…. This group of seven girls started off…

Holland Vs Paris

I’m sure I have this story wrong but the principle is the same so here goes…… You book a holiday to Paris. Its somewhere that’s been on the ‘to do’ list for a while so you’re really looking forward to it. You research the best restaurants, places to visit, plan your day trips to visit…

Not Usually Associated with a Full Life.

By the time Teddy was 6 months old he was racking up a long list of things that weren’t going his way and we were now on first name terms with plenty of staff in our Alder Hey Children’s Hospital. We knew he had hearing loss and although he had his hearing aids, they brought…

It all Started with a Failed Hearing Test

These audiology appointments very quickly became the bane of my life! Teddy failed the routine new born hearing test, but I was able to come up with plenty of reasons to reassure myself of why this was nothing to worry about. 1) The ward hostess was being quite noisy while the test was ongoing- maybe…

SCBU

So, I know I finished my last post by saying ‘it was time to be happy’, but that was short lived. The rubbish feeding had started just hours old. I was trying to breastfeed Teddy and he was not interested at all. Fancy that- having your boobs rejected! Pfft! Within a few hours, Teddy was…

Labour Day

It was March 2017 when I found out I was pregnant again. I had been taking the recommended higher dose of Folic Acid which in theory should help lower the risk of another neural tube defect so we were feeling fairly confident- surely, we had had our bout of bad luck?! Again, it was another…

Louis

Friday 2nd December 2016, Adam and I arrived at Delivery Suite at 10:30 ready to have our baby. We were under the impression I should have delivered within 24 hours, but it seems the only effect the induction medication had on me initially, was to give me the runs! Fantastic! Then add the extra anxiety…

20 Week Scan- Nothing to be Worried About, Right?

My pregnancy was as plain sailing as they come, zero morning sickness, no cravings, minimal weight gain (which is just as well because I’m no size zero!). Me and Adam sat in the waiting area before my 20 week scan discussing how the ‘nervous’ one should be the twelve weeker, not this one…. Talk about…