Lucas and I go swimming every week with Puddleducks. Every term, Puddleducks holds a pyjama party week to raise money for a charity and teach life saving skills. The pyjama parties allow the babies and children to feel what it is like in the water with clothes on. It shows them that even though they are much heavier, they can still do the important reactions of kicking to the surface, turning and reaching for the side.
Last term the South Lancashire classes raised money for the Royal National Lifeboat Institution. This time the charity was Prader-Willi Syndrome Association.
Prader-Willi Syndrome is a complex medical condition that affects both males and females. It is caused by a genetic defect where one of the chromosomes from pair 15 is abnormal. Approximately 70% of cases are a result of missing genetic information from the copy of chromosome 15 inherited from the father. It happens completely by chance so it is highly unlikely to have more than one child with PWS caused by parental deletion. Approximately 25% of cases are where both chromosome 15 have been copied from the mother, this is maternal uniparental disomy. The condition is rare, affecting no more than 1 in every 15,000 children born in England.
PWS can cause learning disabilities, reduced muscle tone, restricted growth, behavioural issues and lack of sexual development. It can also cause the person to overeat due to a feeling of constant hunger.
There is no cure for PWS and to date there isn’t a medication to effectively control appetite in PWS. However, there is a growth hormone treatment available to improve muscle tone and stature. Sex hormone treatment can be used for hormone imbalance. Dietary control, exercise, physiotherapy, occupational therapy, speech and language therapy can help a child with PWS reach their full potential.
The Prader-Willi Syndrome Association UK has been operating for over 30 years, they rely entirely on donations as they have no government funding. The PWSA UK support people with PWS, their families and friends. They have a helpline offering support and advice. They also help to introduce people affected by PWS, organising social events and a penpal agency. They campaign and support research into PWS and do training and consultancy work.
For more information or if you would like to donate go to PWSA UK x
The photo was taken in June at the RNLI pyjama party x