Spe­cial sup­port group

Western Suburbs Weekly - - Business - By CAITLIN TILLER

AS the mother of a pal­lia­tive pa­tient, Gi­u­lia Lake says it is all about qual­ity of life for her fiveyear-old daugh­ter Téa.

Ms Lake said Téa’s first seizure hap­pened just 10 min­utes af­ter she was born.

“She has cap­il­lary mal­for­ma­tion mi­cro­cephaly syn­drome and there are only 13 peo­ple in the world with the con­di­tion,” Ms Lake said. “If there is any­thing we can do to pack her time full of fun, we will do it.”

Ms Lake said Téa had daily seizures, took med­i­ca­tion ev­ery day and was in hospi­tal ev­ery 4-6 weeks.

Through Princess Mar­garet Hospi­tal-based Kal­par­rin, a sup­port group for fam­i­lies of spe­cial needs chil­dren, Ms Lake said she had re­ceived sup­port for more than four years.

“I’ve been on moth­ers’ week­ends, my hus­band had been to dads’ din­ners, we took Téa on ‘Up and Away’ day and even though she’s vis­ually im­paired, she couldn’t have a big­ger smile on her face,” she said.

“You feel very iso­lated in the dis­abil­ity world; when you can talk to other moth­ers it gives a chance to talk with­out judge­ment.”

Kal­par­rin won a $100,000 grant from Im­pact100 to sup­port their fam­ily and sib­ling sup­port pro­gram late last month.

Kal­par­rin gen­eral man­ager Chris­tine Stott, who has lived ex­pe­ri­ence with a spe­cial needs child, said Im­pact100 was “amaz­ing”.

“They’re an or­gan­i­sa­tion of or­di­nary peo­ple com­ing to­gether with­out the fan­fare,” Ms Stott said.

Ms Stott said it was im­por­tant to fund men­tal health sup­port, ser­vices to talk about re­la­tion­ships and to help peo­ple un­der­stand it was OK to be sad and stressed.

“You lose spon­tane­ity and it im­pacts on the fam­ily dy­namic,” she said of the knock-on ef­fect of hav­ing a spe­cial needs child.

Pic­ture: An­drew Ritchie www.com­mu­ni­typix.com.au d446091

Gi­u­lia Lake with Téa.

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