BLOG: Our PWS journey

28 February 2020

Laura Brown talks about her family’s PWS journey since the birth of daughter Hatty four years ago

Hatty arrived at 38+6 weeks due to low movement. She had quite a traumatic arrival; maternal instincts kicked in and we knew something wasn’t right.

Twelve hours later, she had her first seizure – she was very poorly and was rushed to the newborn intensive care unit (NICU) where they made her stable.

It was in the NICU that they noticed certain characteristics: she was very floppy and had no suck, and there were a number of facial features that alerted them to a possible genetic condition.

Fast forward two weeks and we had a meeting with her consultant following another seizure. We were given a diagnosis of Prader-Willi Syndrome and our world felt like it had fallen apart.

Hatty is now four and she has and continues to defy her condition. She has friends who love her, and she loves them back. She may not be as quick to run around as them and her speech isn’t quite as clear, but her determination is just incredible.

She has her bad days, where PWS can get the better of her, but she is the brightest little girl with a wicked sense of humour and the speed in which she can solve a puzzle is mind-blowing.

She is an amazing big sister to her two-year-old brother, Hugo, although they love the odd scrap. Hatty actually eats less than him so we can keep on top of any weight gain.

Hatty has taught us so much and changed our lives for the better; my husband and I are very active and even more so now to set a good example to our children –

and Hatty already knows that a big part of life is exercise and diet.

Whilst PWS can be hard on all the family, your world doesn’t end – it’s just a different journey, you just have to navigate through it.

Enjoy and celebrate the milestones. Whilst they might not be the conventional ones, they are still just as special.

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