Serenity's Prader-Willi Syndrome Journey

We all are! Whether we are parents or not, whether we have children with extra needs or not, or even just about our carers, friends, family and life in general. Every one of us will have anxieties about the future in some way or another. Sometimes I do worry about Serenity and if she will Read more

I have worked as a Project Manager / Construction Consultant for the past 8 years, within the past 2 years I moved from my old job as a Consultant to a Project Manager in a Housing Association. I love my job and I have always had my own goals when it comes to career, lifestyle Read more

Serenity turns 2 in July, she has made so much improvements and progress with her milestones. She has been discharged from the Community Nurses and the community dietician as she is now officially of all tubes! We are now on the waiting list for a Paediatric Dietician. In addition to her other consultants we are Read more

Serenity started nursery October 2022. She goes two days a week and she absolutely loves it! I was reluctant to put Serenity into nursery as back then she was still quite fragile. She still couldn’t sit up and was having intermittent NG tube feeds. The main reason for Serenity going into nursery is the social Read more

Serenity is my first child so for me this is the norm, if you have another child with Prader-Willi Syndrome this post may help you in learning what is different for us. Firstly the pregnancy and birth was a lot different for us compared to anyone I’ve ever know. All of our journeys are different Read more

Please note I am not a dietician, and do not have any dietetics background. Whether these are ‘right’ I don’t know but its meals that I find balanced and healthy and which Serenity loves. I am writing this as Serenity is 1 year, 4 months old. She can manage small lumps now, probably half the Read more

Its important to remember not to compare your child against anyone else, even with the same condition, they develop and grow all in their own ways. Even children with extra needs cannot be compared to one another. All of Serenity’s life we have been told that all of her milestones will be delayed and that Read more

Serenity started Growth Hormone on 03 October 2022, at about 15 months old. She had a sleep study conducted on around February 2022 to check her breathing and oxygen levels were okay to start the hormones. She will continue to have sleep studies done while she is on GH, probably around every 6 months to Read more

We had our first appointment with the dietician in our new house, we waited 6 months for this appointment and it didn’t particularly go well. Serenity’s weight has plateaued, I’m not sure if this is something to do with her condition or her nutrition. The dietician’s advice I didn’t really agree with, but I think Read more

Please note I am not a dietician, I have no dietetics background, my degree is in Construction so far from it! All this information I have learnt from guidance from the hospitals, our dietician combined with my own research. Serenity has always been NG Tube fed from birth. Serenity had my breast milk down her Read more