Tell us a bit about Bella, yourself and your family
Bella is 21 months old and she is a very special soul. We live in Cardiff and along with Bella’s brother and sister, have recently become a part of the Angelman community.
What was your journey to the diagnosis?
We received Bella’s diagnosis when she was 11 months following a number of months of specific genetic investigations.
Our journey pretty much started when Bella was born – she had a really tough birth, time in intensive care and the hospital was a second home really with many specialists and investigations which then led to genetic specialist involvement. All especially tough during covid times.
The hospital is still a second home and we are really grateful for Bella’s team of healthcare specialists who make sure she’s getting the best help and every opportunity.
Why are you supporting FAST UK?
We are wholeheartedly supporting FAST UK and the amazing work they do in the development of therapeutics for Angelman Syndrome, in the support of families and the sharing of research and information to help us better understand the condition and how best to ensure the world is adapting for our precious children.
Your recent coffee morning fundraising event looks awesome. Tell us what it took to organise it?
We have so many amazing friends and family who are backing and supporting Bella and the cause, that it didn’t take much. I also love organising things like events so it’s always a pleasure to do.
One of my oldest friends, Gary, is an amazing musician and he organised that side of things. He asked his piano pupils to perform as well as lots of contacts he has in the signing world so it was a musical extravaganza!
Rich and I sorted the other side of things with the raffle, activities, tea, coffee and cake stall and spoke to local businesses and volunteers who donated money, prizes and cakes for the morning. It’s incredible how generous people are. Our friends and family all drafted together to run the stalls so it was a huge collective effort.
Our church, St Edwards in Roath, was amazing in helping us run the event and providing all the bits we needed to run the day smoothly.
Do you have any advice for other supporters? How could they organise something similar to raise funds for FAST UK?
The FAST UK and Angelman UK trustees have been so helpful in supporting our ideas and our requests with emails and letters to show why we’re doing the event and getting extra support from local businesses. It’s really helped in securing extra fundraising and awareness which is of course super important. The amount of people who have wanted to help and be involved in fundraising has been astonishing. The world is filled with lots of very kind people. It goes to show how important it is to make people aware of our cause and how precious our angels are.
How did you manage to balance Bella’s additional needs and putting together an event of such scale?
We are really lucky to have an extremely supportive family and group of friends who are always offering to be a part of the events that me and Rich are organising. Bella’s needs come first and then I use any spare time I have (usually 3 o clock in the morning haha) to sort everything we need to run these events. It was only our first one so it wasn’t huge but we have exciting ideas and big plans for the future.
Tell us more about your ongoing campaign. What is your next goal?
We are holding another piano coffee concert in September so that’s exciting but looking ahead, we are excited to be planning really inclusive family events which aim to bring more awareness and inclusion to disability.