Con­di­tion not stop­ping Claire

Coast young­ster div­ing in to life after ma­jor surgery

Sunshine Coast Daily - Caloundra Weekly - - LIFE - Danielle Ford [email protected]­news.com.au

IF IT weren’t for ma­jor surgery two years ago, Claire McCul­loch would have grown to stand at more than 2.5m tall.

The Twin Wa­ters res­i­dent was di­ag­nosed with gi­gan­tism when she was seven, after doc­tors dis­cov­ered a tu­mour on her pi­tu­itary gland.

The rare con­di­tion causes ab­nor­mal growth in chil­dren, with Claire hit­ting her cur­rent height of 1.6m at age seven.

But thanks to US sur­geons, the 11-year-old’s rapid growth has been halted for the past four years.

In 2016 Claire un­der­went surgery to re­move her pi­tu­itary gland, which mum Toni said was a last re­sort.

“The tu­mour caused her pi­tu­itary gland to pro­duce too much growth hor­mone and we tried for about six months to con­trol it with block­ers (med­i­ca­tion) but it didn’t work,” she said.

“Doc­tors were telling us they could only get about 80 per cent of the tu­mour off and be­cause the med­i­ca­tion wasn’t work­ing we couldn’t leave 20 per cent on there.”

After ex­haust­ing ev­ery op­tion avail­able in Aus­tralia, Claire and her par­ents trav­elled to the US, where Claire un­der­went the surgery to re­move her pi­tu­itary gland.

With­out a pi­tu­itary gland, Claire’s body is un­able to pro­duce the hor­mones it needs on its own, so she is on full hor­mone re­place­ment ther­apy for the rest of her life.

For the past two years Claire’s growth has been on hold but the Year 6 re­cently started growth hor­mone re­place­ment to al­low her to con­tinue to grow.

“We al­ways joke with the doc­tor about grow­ing tall to al­low her to be a WNBA type per­son be­cause they are around 2m,” Toni said.

“But that’s not re­al­is­tic be­cause it’s abus­ing the sys­tem and things like knees and stuff, it’s great un­til you’re 30 but not after that.

“Med­i­cally the for­mula is mum plus dad di­vide two mi­nus two ... she will be about 1.8m then she will go off the growth hor­mone re­place­ment and stay that height for life.” It’s a process that costs the Coast fam­ily a lot of money, with it not be­ing cov­ered by the PBS, but they re­cently re­ceived a help­ing hand from the Steve Waugh Foun­da­tion, a not-for-profit or­gan­i­sa­tion founded by the for­mer Aus­tralian cricket cap­tain that sup­ports chil­dren fight­ing rare dis­eases in Aus­tralia.

“The quar­terly cost of Claire’s med­i­ca­tion is $2000 and that has gone up to $5000 with the hor­mone re­place­ment and the Steve Waugh Foun­da­tion has cov­ered nine months of med­i­ca­tion costs for us,” Toni said. “It’s just the big­gest help and we are so grate­ful.”

Ac­cord­ing to Toni, the re­silient young­ster has main­tained a pos­i­tive out­look on life through­out her or­deal, never giv­ing up her love of par­tic­i­pat­ing in sports.

Claire said play­ing sport kept her happy and, de­spite some­times not feel­ing 100 per cent, she had never thought of giv­ing it up.

“I train for swim­ming for two hours most morn­ings and I play bas­ket­ball,” she said.

“I love sport be­cause I just love be­ing ac­tive and hav­ing fun with my friends.”

PHOTO: JOHN MCCUTCHEON

LIV­ING STRONG: Claire McCul­loch is thriv­ing after ma­jor surgery two years ago to re­move her pi­tu­itary gland, which had devel­oped a tu­mour, caus­ing gi­gan­tism.

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