Meet Archer Davies: Smashing through barriers despite a diagnosis of Angelman Syndrome

This month Angelman Syndrome Awareness Day falls on 15^th February and we wanted to mark the occasion by shining a light on one of our amazing families who are navigating their own journey with Angelman Syndrome, one positive step at a time. Living in Derby with his mum Charlotte and younger brother Ezra, five-year-old Archer Davies is a bundle of joy, filling the house with his magnetic personality and boundless energy. He shares an incredibly close bond with his little brother who loves nothing better than making him laugh.

Archer's diagnosis

Archer was diagnosed with Angelman Syndrome, a rare genetic condition that affects the nervous system and causes seizures along with severe physical and learning difficulties in April 2020.  Mum Charlotte describes how “It was like winning a really rubbish lottery. I wouldn’t change Archer for the world but equally I wouldn’t give him Angelman Syndrome if I had a choice. The timing of the diagnosis was awful as it was at height of Covid. The world was falling apart around us and suddenly there was another huge thing for us to get to grips with.” Charlotte went onto say “I knew something wasn’t right as Archer hadn’t reached many of his milestones but getting this diagnosis we’d never even heard of was a huge shock. Despite its lovely sounding name it really is not a nice condition.”

Angelman Syndrome's affects on the whole family

Archer’s condition means he needs constant care, which places significant pressure on Charlotte, especially as a single parent. Balancing the needs of Archer and looking after Ezra is no easy feat. "It’s a constant state of mental overwhelm," Charlotte admits. "When he’s awake, his needs take priority and his condition limits what we can do together as a family.” Ezra, though only three, is fiercely protective of his older brother, and Archer’s face lights up whenever his little sibling is around. On the other hand Charlotte shares that watching Ezra progress while Archer struggles with milestones is bittersweet. “It’s amazing to see Ezra grow and develop, but it’s also hard because these are things Archer hasn’t been able to do. Archer gets frustrated because he loves his brother and wants to keep up.” Charlotte explained.

Hope for the future

Charlotte’s dream is to see Archer up and walking saying “This would give him a much better quality of life, although it would also bring its own challenges. Being able to move independently would be amazing as it would allow him to actually play like other children and he won’t be limited by whether there is someone free to move him.”  She went onto say “It would give him a little more independence and give him that freedom to live better. And it will definitely help my joints as he’s getting quite big and heavy now!”

Tree of Hope's Support

Charlotte came across Tree of Hope through Emma Goodson, Mum to #BeMoreWilliam, another Tree of Hope parent and prolific marathon runner, through an Angelman Syndrome Facebook forum. Knowing that Charlotte was thinking of fundraising for a trike, Emma recommended she approach Tree of Hope for help. Charlotte said “She said it was a really supportive network and she was right. The team’s support has been incredible and I would 100% recommend them.”

Archer's previous Fundraiser

A campaign in 2023 to raise £1800 for an adapted trike reached its target in a weekend and Charlotte has now set up a new fundraiser to raise £5000 for a year’s worth of weekly physiotherapy for Archer to help him on his journey of learning to walk. Despite not being a runner, Charlotte has secured herself a place in the London Marathon 2025! Charlotte told us “Archer battles every single day to take a few steps or to shuffle across the room? I’m not a runner and the training will be horrendous, but it is a drop in the water compared to the challenges that Archer faces every day.” She went on to say “I am running so that he can one day run too. I am lucky to have a fantastic group of people around me who are keeping me motivated with the training.”

Thank you for your support

To those who have already donated or shared Archer’s story, Charlotte is deeply grateful saying “Unless you have lived this experience, I don’t think anyone truly understands how much their support means. It means so much more than they could possibly realise.”

Angelman Syndrome Conference

Charlotte and Emma recently attended a conference in Florida around the trials that are taking place for Angelman and found it a hugely inspiring event. Charlotte explained “There are so many positive things happening and some of the trials are showing some really good advancements and the kids are really developing. Although it’s a very lengthy process it gives us a little bit of hope that there will be something in the future that can help them.”

Good Luck Charlotte

The whole Tree of Hope team is cheering Charlotte on as she trains for the marathon, and we look forward to continuing to support Archer throughout 2025. To follow Charlotte’s fundraising efforts and keep up with the latest updates, please visit https://www.treeofhope.org.uk/ways-to-give/childrens-campaigns/our-angel-archer-im-running-so-that-he-will-too/