Millie's story Prader-Willi syndrome (PWS) - Jeans for Genes

Millie's story

Millie is five and has a rare condition called Prader-Willi syndrome (PWS). It’s a genetic disorder that causes learning difficulties, problems with motor skills and a vigorous appetite. Weight gain can be rapid, leading to severe obesity that can result in diabetes, strain on the heart, lungs and skeleton, and even early death. Millie is in a wheelchair, communicates through sign language and takes growth hormones to make her stronger.

Born at 35 weeks, Millie was floppy, with low muscle tone, no reflexes and she couldn’t swallow. A blood test at five weeks showed that she had PWS and Millie’s parents were somewhat relieved. ‘We didn’t know what was wrong with her for five weeks,’ says Millie’s mum, Patsy. ‘I was shocked when the doctor told us more about PWS. I’m a very practical person, so I went home and did my research.’

Patsy discovered the Prader-Willi Syndrome Association UK (PWSA UK). The organisation supports families affected by the condition by providing information, resources and assistance with getting special educational support. ‘I went through a period of mourning for the child I thought she’d be. When I was ready, PWSA UK supported me with that,’ says Patsy. ‘People didn’t know what to say to me when I brought Millie home. I never got to celebrate the start of her life – no one sent any cards. Meeting other parents of children who have the condition at events PWSA UK has organised has been so important because they have been through similar experiences and they know how isolating it can be.’

Millie has to stay on an aggressive diet of just 700 calories a day. Her siblings Ben, 18, Tia, 13, and Kaitlyn, who’s nearly two, can’t eat in front of their sister. When the ice cream van comes, all her playmates quickly buy what they want and head indoors. ‘The children in our street love Millie, everyone knows her,’ says Patsy. ‘She rides alongside them in her wheelchair and she feels very included. But they know not to eat in front of her.’

Getting an early diagnosis and the expert support of PWSA UK have helped the family cope with Millie’s condition. She has a high pain threshold, which makes it difficult to tell when she is ill.  Her body temperature is consistently low, at 34.5° to 35.5 °C, and her family have learned that she needs to go to hospital when it increases to over 36.5 °C. She communicates through sign language, and through attending a nearby special needs school her speech is coming along well.

Millie is a loving, joyful little girl who is happy 90 per cent of the time, and loves drawing, watching CBeebies and being outside with her friends.