Sienna
The following is written by and shared with permission from Sienna’s parents. They would like to share Sienna’s story to help raise awareness of White Sutton Syndrome.
I reached out to my daughter's nursery to say I would like some help with Sienna at home, due to ongoing challenging behavioural issues which have caused a lot of stress for us as a family. I was then referred to The Dragonfly Project. I had a meeting with Hannah and she was very knowledgeable and caring and I could tell she really wanted to help as much as she could, Hannah was so lovely and approachable, and I felt completely comfortable from the get go.
The service is great and she arranged a meeting straight away to get all the professionals and family involved with Sienna in one place to discuss how we can move forward and put an action plan into place. I am very thankful to have met Hannah.
Sienna’s Story
My daughter Sienna (my first and only child) was diagnosed with White Sutton Syndrome in May 2025. We are still trying to navigate this journey with very minimal support here in the UK.
We are based in Portsmouth and as far to my knowledge, we are the only family going through this in our area. I have managed to find some connections around the UK which has helped a great deal.
Sienna is currently 4 years 10 months, she is overall a very happy child but definitely comes with her challenges. Sienna was behind in all her milestones but as a new parent I hoped and had faith she would catch up.
She was eventually referred to a paediatrician when she couldn't talk or walk still at the age of 19 months. She had assessments, and physio for her tight muscles in her ankles and legs and had to wear an ankle support to stretch the muscles at night. Sienna had feeding issues as a baby due to her tongue tie; she also had to have grommets fitted as she had glue ear.
Sienna was referred for genetic testing due to her developmental delay and facial features which caused the paediatrician to think she had a syndrome of some kind, the tests come back normal but she was then referred for a more in-depth genome sequencing genetic testing along with me and her father.
After 8 months of waiting the results showed Sienna had White Sutton Syndrome de novo, which was not inherited from me or Sienna's father but was infact a change in her Pogz gene which has caused her to have this syndrome and explains all her delays and troubles we had with Sienna as a baby.
Sienna is on melatonin at night due to having very poor sleep where her brain couldn't switch off and it would take hours for her to get to sleep, she would also wake every two hours.
To this day Sienna is non-verbal but has just started to say a few words such as Mama, Dada (something we've been longing to hear for so long) bye bye, and Row Row, for her favourite nursery rhyme. Sienna is classed as severely behind with her language and overall development - her chronicle age being around 2 years old.
She is genuinely a happy child but definitely comes with very challenging aggressive behaviours, such as severe meltdowns, hitting and kicking, lashing out at me or anyone around her and occasionally even hurting herself. Sienna’s main issue at the moment is throwing objects at my head on a daily basis. She throws things directly at other children and adults around her, seems very impulsive but also intentional as she may target certain adults and children.
She does not understand emotions and cannot regulate her own, she is intrigued when children cry. Due to her not ever being able to cry or produce tears herself, she will just scream when she is angry or sad, a very high pitched scream! She is either very happy or very angry! And it can change within a split second and half the time you don't know what has upset her.
I am wondering if in time if these behaviours may get easier to manage as she gets older and am being very hopeful, as I really do struggle to cope and understand it, but I am very happy to receive any support along the way and am very thankful for the Dragonfly Project trying to help and support us. The lack of knowledge around this syndrome makes things incredibly difficult for us as a family, we are hoping that in time this may change and it will help to spread awareness whenever we can.
Thank you for reading our story.
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