A note from Sarah (Charity Manager/Founder) | Peeps | HIE Awareness & Support

A note from Sarah (Charity Manager/Founder)

A little girt wearing a hat that looks like a Christmas tree, holding a grey teddy bear dressed as an elf.

A note from Sarah (Charity Manager/Founder)

I’ve been wanting to say hi for such a long time!

The weeks have flown by and we’re almost at the end of the year. I hope you are keeping safe and warm!

Christmas can be a wonderful time of year. It can also be a particularly tricky time for many of our families. There might be heightened emotions and we know that there’s also illness and hospital stays, so we’re sending extra love and gentle wishes to anyone who might need them.

2022 has seen so much happen at Peeps; we have reached more people and been able to offer support in different ways, whether that’s having a chat with a fellow HIE mum or dad, arranging and paying for counselling or trauma therapy, via our online resources and group sessions, as well as Peeps Together events, or funding for equipment that wouldn’t otherwise be available.

It’s a real privilege to be able to support in some way, being alongside families as they navigate their HIE journey.

Our tiny team has expanded. We welcomed Anne as our Family Inclusion & Support worker, to join myself, Liz and Michelle. We’re all part-time, but what we may lack in hours we certainly try and make up for in commitment and compassion. We know just how precious every donation to Peeps is, so we always spend money wisely, and that includes making sure we work as smart as we can!

One of our aims has always been to raise awareness of HIE, and thanks to our relationships – existing, new and growing – with the NHS, community groups, charities, individuals and organisations, more and more people are able to say they have #HeardofHIE. This is something we want to continue in 2023 (pop the 4th April in your diary for HIE Awareness Day), so if you work for a company or have any contacts that may be interest in joining forces, please do point them in our direction.

We have also been involved in several research projects, supported by our Parent Panel to ensure that as many voices as possible are heard from the HIE community. This has developed further as we launched our Professional Panel, bringing together even more experience and expertise, from those who work closely with families touched by HIE.

Both of these panels are run on a voluntary basis, and we are super grateful to everyone who gives their time.

I hope you don’t mind, but I thought it would be nice to share a little festive picture of our daughter, Heidi – our reason for, and driving force behind, Peeps.

When Heidi was a baby (which doesn’t seem two minutes ago, I can’t quite believe she’ll soon be 8!) I dreaded Christmas. It felt like another reminder of how different our life was, how I couldn’t choose “typical” toys for Heidi to play with, or that I wouldn’t watch her run downstairs to see if Father Christmas had been.

For families who may be in the early weeks and months, you’re not on your own. I hope you can find some joy, even if there is some sadness, and please try not to put too much pressure on yourself. The images you see on social media of everyone having the perfect day may not be a true reflection of reality!

Things can get better though. Each year eased a little for us, and we now fully embrace the festivities. #HeidisHeadgear is a thing, and as you can see by the pic, silly and sparkly is the way to go.

I never take for granted that we managed to find our way to be ok, even if ok isn’t how we imagined it would be before Heidi arrived. I’m thankful for the families who went before us, setting up The HIE Network Forum on Facebook, and offering us support and reassurance when we felt so lost.

We now just want to help others find their way to be ok too, however that might be. Everything we do at Peeps is from a place of kindness and through our lived experience.

We can only do what we do thanks to our supporters. Every donation (no matter what the amount, or how many knitted hats!), every hour volunteered, every share of our information really does make a huge difference.

Thank you for being there, and for all the lovely comments and feedback you have shared with us. It means so much.

Wishing you all a peaceful Christmas and our best wishes for 2023 from the team at Peeps, and a special thank you from me.

With love,



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