Fundraising Spotlight: Ceci
We were amazed by how brilliant a recent fundraising event was organised as part of the CAN Campaign by Ceci’s parents. Ceci’s mum Heather is sharing their experience in today’s Fundraising Spotlight.
Tell us a bit about Ceci, yourself and your family
I’m Heather, and my husband is Thomas. I work in corporate sales, and my husband is a director of a construction company. Cecilia is our 3rd born; she has an older sister Alexa Mae aged 4, and an older brother Tommy aged 9. When Ceci was born, we definitely felt blessed and knew our family was complete.
What was your journey to the diagnosis?
Cecilia was born on time with no complications and a healthy 8 lbs. She was definitely a happy baby, smiling so early. She struggled to drink her milk, and we put this down to her being tongue-tied, but after having this corrected, the struggle continued, but we now know this was due to her syndrome. By about 3 months, we knew as parents something was not quite right. Ceci was not doing the typical actions and responses our elder children did at that age. We started to see a paediatrician by the time she was 6 months and voiced our concerns, time went on, and we were told she is just a slow developer.
We continued to see doctors, and when she was 2, we got a blood test done which confirmed she had Angelman syndrome. The diagnosis was devastating to us. Our lives had changed forever in the one moment. It was like dealing with bereavement at first. But after a while of coming to terms with our situation and being part of Angelman support groups, we have definitely come through the other side and see Cecilia as a blessing to us all. She honestly brings us so much joy and gratitude to our whole family.
Why are you supporting FAST UK?
We wanted to support FAST UK as we believe there is a cure for Angelman. Seeing how well FAST in the US are doing made us want to help make it happen here in the UK. FAST UK is run by parents who have children with Angelman, so we definitely knew we wanted to help and be involved!
Your recent golf fundraising event looks amazing. Tell us how you prepared it?
Our end goal is a sponsored cycle from Manchester to Edinburgh, and one of the dedicated riders, Lou Malone, is captain at one of our local golf clubs. They do a charity golf day each year, and of course, they chose FAST UK on Lou’s recommendation. It was a perfect day with glorious weather, and we managed to raise £900.
Do you have any advice for other supporters? How could they organise something similar to raise funds for FAST UK?
We are very fortunate to have friends and family who want to help, so I think talking to as many people as you can and sharing your story and accepting help when it’s offered is a great start.
Tell us more about your ongoing campaign. What is your next goal?
Everything we have done is centred around the sponsored cycle from Manchester to Edinburgh, which my husband and some of our close family and friends are doing on the 13th of July. Their aim is to arrive in The centre of Edinburgh on the 17th July where myself, the children and family will be waiting for them to celebrate their arrival!
This is a tough challenge as all the riders are not professional sportsmen by any means, and some didn’t even own a bike until they volunteered. They all have busy family lives and work full time. We are truly grateful for the commitment with the training they have so far.
After they have completed the cycle, we will be planning to do a family fundraising day to thank the riders and raise more awareness and funds. We also hope to do a live raffle at this event, so we will be selling tickets on the run-up to the day. The raffle will include a B&B stay at the Marriott and another at Innside by Melia hotels. A 6 piece Dewalt electric tool kit. A signed Marcus Rashford football shirt. These have all been donated by friends and family by speaking to people about our event.
FAST UK is super grateful for Ceci’s parents, family and friends putting such a high-quality fundraising series. Please support the Cycling for Ceci campaign or start your own fundraising.
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