A year ago we learnt that Emily has Angelman Syndrome. The day we will never forget.

This year has been full of adjusting expectations, hard work and hope.

Over the last year Emily, who will be 2 in April started crawling, took her first wobbly steps, started interacting with us and settled into a routine at the nursery and at home.

Sleep is still a struggle almost every night. Emily’s delays in gross and fine motor skills are obvious now as well as complete lack of speech.

But Emily’s smiles and hugs are the sweetest. Emily is very curious and likes exploring the world around her in every available to her way. Emily also started showing her cheeky character by stealing snacks from her daddy.

This year we learnt so much about Angelman Syndrome, disability, genetics and clinical trials. We are so grateful for FAST - the energetic community looking for a cure! With multiple human clinical trials in place currently, we are confident that FAST and the whole Angelman community with absolutely amazing scientists by their side will find a cure for Angelman Syndrome in our lifetime.

But we want that to happen sooner rather than later, so that’s why we need your support.

We choose a life where we raise as much awareness and funds as we possibly can for Emily and others living and not yet born with Angelman Syndrome so that they don’t need to suffer from the terrible things that Angelman Syndrome adds to their lives.

Therefore, here is our 2022 Cure Angelman Now campaign!

This year we are feeling a bit more adventurous and would like to take on a challenge that Emily can participate in for my and Emily’s birthdays. Over the coming months, we will be travelling across the UK (and maybe outside the UK too) for Emily to do assisted walking in various places to cumulatively walk 100 meters! Go, Emily!

We appreciate your support and any donation - thank you so much. If you are a UK taxpayer, please don’t forget to select Gift Aid. Also, it’s worth checking if your employer can match your donation, as this would practically mean doubling your donation in some cases - which is amazing.

If you’d like to support us more by donating your skills, helping us find corporate sponsors or running your own fundraising for FAST UK - please let us know.

Please follow us on Instagram where we will be sharing Emily’s steps and our journey! We will also be posting updates on this page - so stay tuned.

If you are interested in learning more about our journey, please visit our fundraising page from last year.

Better days are coming!