Fam­ily sup­port

Fam­ily sets up net­work to sup­port boy with rare ge­netic con­di­tion.

North Coast Times - - NEWS -

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.

Picture: Bruce Hunt www.com­mu­ni­typix.com.au d480813

Louise and Troy Clay­ton with sons Ni­cholas and Mitchell. PWS has been a ma­jor chal­lenge for the fam­ily.

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