11/09/2026
Everyone look at me! ❤️
Sienna's Story
Sienna is 26 months old, the youngest of five children and very much adored by her four older siblings, living in Manchester, UK.
Our Angelman journey really began when Sienna was around 10 months old. She wasn't rolling and was starting to miss more developmental milestones. By 12 months, she was assessed as developing at around a six-month level by a specialist health visitor. Having four older children who had all developed typically, we could see that Sienna's development was following a very different path.
That began the process of referrals, therapy and eventually genetic testing , we have been very lucky to have had such wonderful professionals involved. At 18 months old, we received the diagnosis of Angelman syndrome, caused by paternal UPD.
At 26 months, she has already come a long way. She can sit independently and move herself from sitting to lying and back up again. She rolls to get around, claps, gives high-fives, kisses and cuddles, and has started signing "food." She knows everyone's names and will look directly at the right person when we ask where they are. She understands a growing number of familiar words, including bath, milk, food, cuddle and dog, and she knows to use "gentle hands" with our dog.
Communication is beginning to emerge in her own way. Sienna doesn't have any spoken words yet, but she reaches towards things she wants, uses her expressions and body language and is showing us more of what she understands.
Sienna isn't yet able to weight-bear independently, stand, crawl or shuffle, so mobility is still very limited. She receives physiotherapy and play therapy and is now starting speech and language therapy. She also attends a private day nursery, who have been absolutely amazing with her and have embraced her needs from the beginning.
Sleep can be particularly difficult and remains one of the harder parts of Angelman syndrome for us as a family. So far, however, Sienna has not experienced any seizures, which we are very grateful for.
One thing that has really helped us throughout this journey has been documenting Sienna's progress on social media with her older siblings. When you're with your child every day, progress can sometimes feel incredibly slow. Then we look back at a video from six months ago and realise just how much has changed. Things that might seem tiny to somebody else such as side-lying or understanding a new word, can feel enormous to us.
We are still very early in Sienna's journey, learning from others who have walked this path before us and we don't know what the future will look like. For now, we're trying not to look too far ahead. We keep giving her opportunities, celebrating every bit of progress and allowing Sienna to show us what she is capable of.
