BELDON Education Support Centre student 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 he 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 Facebook support group with members from Quinns Rock, 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.
“These families understand this and are keen to interact with other PWS families to share their experiences and knowledge.”
Mrs Clayton said PWS was a changing condition that included seven distinct stages, with Mitchell having experienced several of them.
“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.
“Mitchell’s speech is very delayed and he was diagnosed with global developmental delay at 18 months old.
“As he gets older, he develops an insatiable appetite and feels hungry all the time, his brain does not get the right messages that he is full.”
The mother-of-two said because of this, Mitchell needed strict calorie control as he could put weight on quickly which increased the risk of him developing diabetes and heart disease.
There is no cure for PWS and the only ‘treatment’ is nightly injections of growth hormone which help with muscle production and stamina.
The group will hold support meetings at LifePlan in Welshpool and will post event information on the WA Prader-Willi Syndrome Support Group on Facebook.