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Henry is almost 2
Henry has a condition called Prader Willi Syndrome.
It is characterised by a lack of muscle tone, a tendency to over-eat leading, potentially, to obesity.
There can also be an element of autism and intellectual disability in people with Prader Willi Syndrome, although it varies greatly from person to person.
He spent the first two weeks in intensive care amid fears for his blood sugar levels and a difficulty breathing.
I’m cycling to Galway and back to raise awareness for Prader Willi Syndrome, a rare genetic syndrome. Please sponsor me so that together we can improve the future for children with PWS and their families.
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If you are like most people you will probably have never heard of Prader-Willi Syndrome (PWS). Certainly most parents of children with PWS had never heard of it until the day they were informed that their child would live all their lives with this complex and very rare genetic syndrome. PWS is characterised by symptoms including: hyperphagia; low muscle tone and reduced stamina; emotional and behavioural problems; learning difficulties; respiratory problems; and scoliosis.
The Prader Willi Syndrome Association Ireland seeks to raise awareness and understanding of PWS and to improve the choice and quality of care, education and support for persons with PWS.
Our vision, mission and objections are outlined in full on our website – www.pwsai.ie
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