Son’s rare con­di­tion


Stirling Times - - Front Page - Lau­ren Pi­lat

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 when he was 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 Scar­bor­ough, Dun­craig, and Cottes­loe.

“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 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 a 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.

Pic­ture: Bruce Hunt

Look­ing for sup­port: Louise and Troy Clay­ton with sons Ni­cholas and Mitchell, who suf­fers from a con­di­tion known as PWS.­mu­ni­ d480813

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