Care for Rare


November 2015

‘Hiperinstalism’ A letter about hyperinsulinism from the kids perspective. 



When I was born I had a seizure. My eyes were going back and forth, I was eating my Cheerios, I couldn’t find them. I couldn’t see my mum either. I was brought to the hospital, the doctors said I was having a seizure. 

As I grew up I kept having the seizures and bad temper tantrums. My mum didn’t know why. She called every doctor but they did not find her (answers).

I grew up even more, I got medicine that would make me grow hair everywhere. I have thick hair and little hairs on my arms and legs. I always feel embarrassed when people ask me why, it’s not normal.

I had some problems with my body, I had to go through terrible stuff but my problem has given me a special title that I love. 

This had me completely in tears. I’ve only ever known hyperinsulinism from an adult point of view and never truly considered the impact it has on children, as Penelope is only 17months. How amazing are these kids?!

To learn more about HI, please visit:


My Kid Doesn't Poop Rainbows


The Secret Diary of Agent Spitback
My Random Musings

Brilliant blog posts on


Christmas Wish List and Gift Guide

Yes. I am aware that it is November. Still, I’m being prepared earlier than usual this year because having two babies under two takes up most (well, ALL) of my time, so I’ve got to get started when I can. Here’s some of the things I have found that will be working their way under our tree for the little ones this year or things that I have already bought and recommend. 

1. Gro Comforter

I’m going to start with Laurence. He will be 4 months by Christmas and his needs are simple. Besides eating and napping I think he’ll love a comforter and this is the cutest one I have seen by far. I love all the Gro products so I was immediately drawn to this and it will go perfectly with his Ewan Sheep which he loves. Available here:

2. Reindeer Hat!

Just because… look how cute!

 I need to add this to Laurence’s already pretty huge hat collection. Available here:

3. I have seen so many amazing new Insta Shops pop up recently and it’s definitely made me want to “shop small” this year! Apart from getting a completely unique item that has been made with love it also supports small businesses taking off. Here’s some of my favourites:

  • Lola Loves. Penelope is a brand enthusiast for this cute and amazing brand. The designs are super sweet and come in lovely little packages. Here’s Penelope in her Lola Loves skirt and matching head wrap…
search @lolaloves__ on IG
I enjoy my post looking this pretty 😘
  • Baby Brain Apparel. The lovely lady behind this brand has the cutest curly haired little boy (I am of course partial to the curls 😉) and he is the inspiration behind these charming tee shirts. I especially like the “milk drunk” one!
  • Ferns Fancies. This super talented lady makes all kinds of ingenious baby and toddler related items, in adorable prints. Will be getting a plushmuff for my Oyster tandem this Christmas to keep my mitts warm!
IG: ferns_fancies
  • Oh Arthur. I LOVE the tee shirts from Oh Arthur! Here’s Penelope wearing her ‘Me, Myselfie and I’ one! And, the cute Christmas one I NEED as well! 


IG: oh_arthur
4. Personal gifts

As well as shopping small there are a few vintage items I have my eye on. But, here are two I have already stashed (I told you I was prepared!) I love these Ladybird Garden Gang books I picked up from eBay. I chose Penelope Strawberry and Lawrence Lemon for the obvious reason that it makes the gift personal, something they will hopefully keep.


5. Bibs!

I always need bibs with two little ones and I’ve seen lots of cute festive ones this year already but these are by far the cutest, for design. I also cannot praise Funky Giraffe bibs enough. Penelope was such a dribbler when teething and these are the ONLY bibs I have used that last all day without needing changing. Laurence has reflux and these bibs have been such a god send. Like I said, I can’t praise them enough! They also run offers such as free delivery if you spend a certain amount and 10 bibs for £20 which is great value. Available here:


6. Miffy

Miffy has made a come back and Penelope loves it. It is bright and fun and so are the books. I stashed a few away when I went to the Baby Show some weeks back and I can’t wait to read them with her.

7. Gro Bag

Another Gro item, but look how cute! I can’t wait until it is chilly enough to put Laurence in this! 


Buy it here:

8. More Christmassy cuteness


How sweet is this bear hug jumper?! Thanks for the heads up Milk Drunk!

Get it here:

9. Stocking filler surprise

Who doesn’t love a surprise?! I am going to get Penelope and Laurence these Nüby Santa surprise boxes for their stockings. They have one for up to 12 months and then a 12m+ option as well. Perfect! And, for the bargain price of £15. Nüby is another company that I can’t praise enough! They sent over a box full of useful items for my Penelope and Friends NICU bags. Very nice indeed. 


10. Hey Duggee

Penelope is Hey Duggee mad so I’ve a feeling we’ll be seeing this under the tree too! 

And, that’s the kids. For me, all I wish for is low AFP results and good sugars. And, that Xander the Brave gets his forever liver. Find out more here:

My Random Musings
My Kid Doesn't Poop Rainbows
You Baby Me Mummy
Chilling with Lucas

November is Awareness Month

Well it would seem that November is the Awareness Month. So I am compiling all that are important to me in this one post.

Firstly it is Persistent Pulmonary Hypertension Awareness month. This, along with meconium aspiration, is the reason that Penelope needed her lifesaving ECMO treatment.

There is also World Diabetes Day in November. Even though Penelope has the opposite of diabetes I am always drawn to anything to do with blood sugars as they have hypoglycaemia in common and know fully the daily worry that comes with it and glucometers, even from the opposite end of the spectrum. Many babies who have hyperinsulinism do go on to require a full pancreatectomy in order to “cure” their persistent and fatal hypoglycaemia and as a result end up with type one diabetes. So I do believe there is a cross over and I will be doing fundraising for diabetes in the future as I am a firm believer that if a cure for diabetes can be found, a cure for HI will shortly follow.

November also sees World Prematurity Day. Penelope and I will be wearing our favourite purple tee shirts it. Penelope’s NICU “room mate” Mylo of Mylo and Friends was born 10 weeks early and we followed behind him in each NICU room until finally “graduating” from NICU in the same week. His mum has gone on to do fantastic work for our local NICU and I am following suit. Find out more here:

Also linked to Hyperinsulinism and Beckwith Weidemann syndrome is Pancreatic Cancer Awareness month. Obviously it is the pancreas that is affected with hyperinsulinism causing the overproduction of insulin to be secreted. This can be down to a tumor on the pancreas. In BWS, kids are more likely to develop childhood cancer, namely kidney (Wilms), liver and pancreatic. So this is another awareness campaign close to my heart.

Finally, it is also National Blog Posting Month. Think that just about wraps it up nicely 😉
Brilliant blog posts on

You Baby Me Mummy
My Kid Doesn't Poop Rainbows
Baby Brain Memoirs
My Random Musings

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