Serenity's Prader-Willi Syndrome Journey

The thought of life back home with all this equipment and processes was daunting. I had made reminders on my phone calendar to help remind me check stock levels of certain things; her Infantrini (high calorie milk), her Oxygen supply, Bolus sets for tube feeding, tubes themselves, Tegaderms and Duaderms, PH strips, Syringes. Then her Read more

Prader Willi Syndrome is caused by a missing section of Chromosome 15 in the DNA. It affects the part of the Brain called the Hypothalamus which is responsible for hormones and regulates growth and appetite. Prader-Willi syndrome – NHS (www.nhs.uk) PWSA UK – The genetics of PWS – web ready text with hyperlinks.pdf (cdn-website.com) The Read more

Neonatal life was difficult, I was on the maternity ward for a few days then just stayed by her bedside until we could be given a room to stay in at the hospital. Serenity was on a CPAP machine for about a week and then eventually came on the machine below. I can’t remember what Read more

We named our daughter Serenity, it was my partners choice and it has always been the only option, we never considered any other names. I love the name Serenity and its peaceful, calm connotations. Serenity was delivered by Caesarean, the operation was scary but it felt like I was living out of my body, I Read more

It seems strange to think back to my pregnancy and associate it to a time of distress when my little girl, Serenity, is happily rolling around on the floor. Pregnancy is a different time for each individual and the best advice I could ever give a Pregnant Women is to not take anyone’s advice. Not Read more