Child InterestsSeren is quite a girly girl, loves the pinks and purples and still loves playing with her Barbies and Generation dolls. She names them all and makes up stories about them. She’s also become very interested in space and the planets, referring to her wish to work for NASA one day. We have a telescope and have managed to see the moon with all its craters in detail which amazed her! She loves to draw, has a vast imagination, likes all types of music, Dolly Parton to Taylor Swift and all that’s in between! We also have 2 Bengal mix kittens called Sula and Nala. Seren loves Golden Retrievers and always asks the owner if we can say hello to the dog!
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Biography
Since birth, there were noticeable facial features and craniofacial dysmorphia and asymmetry characteristics. Suspected Crouzons Syndrome (dismissed), we attended John Radcliffe hospital when she was 2-3years old for a scan to see if she had Craniofacial synostosis. This was to determine if she had early fusion of the skull plates. Ruled out but even with a team of 10 or so mixed medical specialists, the geneticist stated confidently that Seren did not have a genetic disorder.
Ultimately, Seren was struggling with her education. Despite being very communicative since birth, we had an educational psychologist assess her competency at learning. It became apparent that she had cognitive and learning issues which meant her working memory was overwhelmed by too much incoming information. We asked for an ECHP to allow her needs to be met for her now and future education. Unfortunately, Covid closed the schools a week or so after we had this assessment. We did have the school place her on the list for an autism assessment which later came in 2023. She has ASD.
Just prior to this, we saw a geneticist who thoroughly inspected Seren physically and emotionally. I placed a piece of paper in front of him and I said do you think she could have this? Noonan Syndrome. It turned out he was receptive to this idea and so once the sequencing had been done, we were told that it was a random mutation of the gene PPP1CB. We did at last have answers and it made more sense to understand what Seren was struggling to deal with.
From early years, being afraid of loud noises, sudden noises and covering her ears, not listening to instructions unless they were short, clear and concrete, fear of unexpected change, no sense of time & how long an hour is. Still today she asks so many questions about everyday things, trying to understand the world she lives in. She is a spritely little girl, of slight build, white blonde wispy hair that doesn’t grow well, shorter than most of her peers. Her personality is amazing and she is very creative in the way she plays. Lots of role play, doing funny videos of herself like they could be on a sketch show. She likes to tell people about her news whether it’s a sleepover at a friend`s house or that she’s going out somewhere with her dad or grandma. She’s starting to navigate the world of friendships and how they can sometimes become tricky, with fall outs and sometimes being on the receiving end of an unkind comment.
During our journey throughout this, we were recently told that she has Cyclical Vomiting Syndrome. Several hospital admissions per year where she cannot keep fluids down and quickly deteriorates. Until we had totted up a history of episodes, the pattern was that a cold would precede the episode, combined with high emotions like anxiety or excitement (every year post Christmas/in hospital January) plus others (3 times so far this year!) , we have open access to the children’s ward and now it’s a case of get her on a drip immediately. The late nights, the worry, the emotions, Google searches and more - we know what’s in place for her now.
With all that said, she is Seren. No matter was syndrome she has, learning issues and emotional problems, she is loved by many. Often becoming her own little superstar with friends and family enjoying her little ditties and videos. I know she will face challenges and big school is one that bothers me. A target for bullies, not keeping up with the work which will only become more challenging for her. She has stuck with her aspirations to be a make up/special effects artist or interior designer. A bit creative like me, her mum. She’s gone though so much in her life and she will be 10 this year. It amazes me that she has come so far and continues to shine albeit at her own pace and usually with a little bit of an attitude at times! I’m so proud of her and love her unconditionally.
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