Thank you for taking the time to visit our page and read our story.

As many of you may know our daughter Hatty was born with complications and spent her first 3 weeks of life in the Neo Natal Intensive Care Unit at Salisbury Hospital. 

She was diagnosed with a rare genetic disorder called Prader-Willi Syndrome, and will face many challenges throughout her life. Hatty will need help from Physiotherapists, Speech Therapists, Nutritionists, Pediatricians, Endocrinologists and Geneticists both to reach her infant milestones, and to continuously support her development throughout her life. 

Prader-Willi syndrome (often called PWS) is a complex medical condition that affects both males and females. Some of the complications people with PWS may face are;

• Hypotonia (Floppy and weak muscles)
  
• Hypogonadism (Poor Sexual Development)
• Learning Difficulties
• Behavioral Problems
• Sleep Problems
• Osteoporosis
• High pain and vomiting tolerance
• Poor temperature control

One of the most significant aspects of the condition is the inability to feel full and so constantly feel hungry. This is due to an abnormality in the hypothalamus.The hypothalamus is a section of the brain responsible for hormone production. The hormones produced by this area of the brain govern body temperature, thirst, hunger, sleep, circadian rhythm, moods, and the release of other hormones in the body. People with PWS will feel constantly hungry their entire lives, which can lead to life threatening obesity and currently there is no cure and little treatment available.

In order to to raise awareness of the difficulties sufferers of this condition will face, and to raise money for the PWSA UK, my wife and I will be running in Tough Mudder in August of this year. 

PWSA UK is a registered charity which has been operating for over 30 years, and is the only organisation in the UK that is dedicated solely to supporting people with Prader-Willi syndrome, their families, carers and professionals, in managing the impact of PWS, promoting transformational interventions, supporting positive, healthy lifestyles as well as more fulfilling life chances, enhancing quality of life and maximising the opportunity to fulfill potential.

They receive no government funding and rely entirely on the generous donations and fundraising activities of our supporters to raise £500,000 every year to support their work.

Any donation no matter how small will be greatly appreciated, and mean a great deal to my family. 

For more information about PWS and the PWSA please visit www.pwsa.co.uk

For a montage of our training and Hatty's progress please visit

www.youtube.com/watch?v=RfdYtczdv-w

Thank you 

Chris and Laura