Family sets up network to support boy with rare genetic condition.
MITCHELL Clayton is a six-year-old growing boy who, unlike other children his age, is injected with growth hormones every night.
The injections are part of his treatment for Prader Willi Syndrome (PWS), a rare non-inherited genetic condition that the Beldon Education Support Centre student was diagnosed with at six days old.
PWS characteristics include small hands and feet, abnormal growth and body composition, weak muscles, insatiable hunger, extreme obesity, intellectual disability and anxiety-driven behavioural outbursts.
Mother Louise Clayton said Mitchell’s diagnosis was difficult and in an effort to help other families going through what they have she created a support group with members from Quinns Rocks, Duncraig, Craigie, Scarborough, Forrestdale, Cottesloe and Huntingdale.
“A support group is vital for this community because there is no one specialist in Perth for this condition and as such there does not seem to be standard protocol in place for treating and managing these kids,” she said.
“Having a child with special needs is incredibly isolating and your sole focus is helping them realise their potential.
“Your social opportunities dry up and after using up all your financial resources on specialists and equipment, there is simply not much left for fun.”
Mrs Clayton said PWS was a changing condition with seven distinct stages.
“Infancy is characterised by failure to thrive, as they have no appetite and are often too fatigued to eat. Children with PWS have very little stamina and will sleep excessively,” she said.
“Their motor milestones are significantly delayed. Mitchell did not sit independently until he was one year old and did not walk until he was nearly three.”
The group will hold support meetings at Life Plan in Welshpool and will post on the WA Prader-Willi Syndrome Support Group on Facebook.
Louise and Troy Clayton with sons Nicholas and Mitchell. PWS has been a major challenge for the family.