Cush­ing’s dis­ease teen

Woman’s Day (NZ) - - Real Life -

The young ac­tor’ s dis­or­der won’ t ruin his dream

Arare pi­tu­itary dis­or­der has dis­torted El­liot Latham’s young body, but the ex­tra­or­di­nary teen has turned his mys­te­ri­ous ill­ness into an op­por­tu­nity to rein­vent him­self.

“I use my body shape to its full ad­van­tage and my brain to en­ter­tain,” jokes El­liot, who lives in Christchurch with his mum De­siree, dad Shane and older sis­ter Kennedy, 20.

El­liot was forced to hang up his foot­ball boots when his weight more than dou­bled over four years, but rather than feel­ing sorry for him­self, he dis­cov­ered a pas­sion for theatre. “I’ve used my dis­or­der as a ‘sec­ond me’, a chance to be­come an­other per­son,” he en­thuses.

In 2012, El­liot, 16, was di­ag­nosed with Cush­ing’s dis­ease, a dis­or­der so rare that it af­fects only one in three mil­lion peo­ple – and less than half of those are chil­dren and young peo­ple. The dis­ease causes the pi­tu­itary gland at the base of the brain to re­lease too much adreno­cor­ti­cotropic hor­mone (ACTH) and in turn the adrenal glands to make too much cor­ti­sol. As well as sap­ping all en­ergy, the dis­ease causes weight gain around the ab­domen and a “buf­falo hump”, or fatty de­posit, at the back of the neck.

In his first 18 months at in­ter­me­di­ate school, El­liot put on 20kg and moved up three uni­form sizes – yet barely grew in height.

“I’ve been the brunt of end­less short jokes and fat jokes,” says the teenager with a shrug. “Noth­ing af­fects me any more. I’m not go­ing to let any­thing or any­one stop me do­ing what I care about.”

At the age of eight, El­liot was a lanky 30kg and played com­pet­i­tive foot­ball twice a week. “He was just one of those healthy, ath­letic and out­doorsy kids,” re­calls mum De­siree, 51.

Trou­bling signs

The first in­di­ca­tion some­thing was amiss was when non­stop El­liot be­gan to com­plain of feel­ing tired. Then he be­gan to put on weight. “At first we thought, ‘Thank good­ness,’” tells De­siree. “His friends were all shoot­ing up and we thought he was fi­nally go­ing through a growth spurt.”

Yet El­liot’s height re­mained the same and in the next four years, he only grew two cen­time­tres.

A spe­cial­ist di­ag­nosed El­liot with a con­sti­tu­tional slow growth rate and said he’d even­tu­ally come right, but he didn’t. De­spite swim­ming four times a week and eat­ing healthily, he was get­ting big­ger and it was be­gin­ning to af­fect how his body func­tions.

“It was al­most like he’d just eaten a huge Christ­mas din­ner – he just had no en­ergy for any­thing,” ex­plains De­siree.

El­liot re­calls, “I would try and play foot­ball – I wanted to do it – but it was like my body wouldn’t let me.”

Hid­ing away

It was a dif­fi­cult time for the lad, made worse by the judge­ments of oth­ers.

“At school, I was re­luc­tant to take my jer­sey off in front of peo­ple,” he says. “I just sort of went quiet for a while and tried to blend in.”

De­siree says she felt peo­ple look­ing in her shop­ping trol­ley at the su­per­mar­ket to see what she was feed­ing her over­weight teen. “I did feel judged,” tells De­siree. “But it was hard­est on El­liot. The teenage years are so im­por­tant and I felt he was be­ing robbed of those nor­mal ex­pe­ri­ences. I was so upset for him.”

The fam­ily went to a sec­ond spe­cial­ist and Cush­ing’s dis­ease was di­ag­nosed through blood, urine and a pet­rosal si­nus sam­pling, which tests for raised ACTH lev­els.

At the end of 2016, El­liot had surgery at Christchurch Hos­pi­tal to re­move a nonc an­cer­ous tu­mour in his pi­tu­itary. Af­ter­wards, how­ever, he re­mained list­less and over­weight, and his salt lev­els and fluid bal­ance be­came af­fected.

Re­calls dad Shane, 50, “The surgery hadn’t worked and it was a real strug­gle for a while to keep El­liot in a

pos­i­tive frame of mind.”

Re­fus­ing to give up, the fam­ily did their own re­search and made con­tact with Pro­fes­sor Robert Smee, a Syd­ney spe­cial­ist in ra­di­a­tion on­col­ogy. Af­ter pub­licly fundrais­ing on Givealit­tle, the Lathams trav­elled to Syd­ney in April and paid pri­vately for ra­di­a­tion treat­ment on El­liot’s pi­tu­itary. “Life-chang­ing” is how De­siree de­scribes that 30-minute pro­ce­dure.

Although the teen has to be closely mon­i­tored and will now need a chem­i­cal hor­mone re­place­ment to keep his body in check, the fu­ture looks bright since the treat­ment.

The fam­ily wanted to share their story with Woman’sDay to help peo­ple un­der­stand Cush­ing’s dis­ease.

“It’s been heart­break­ing to see peo­ple judg­ing El­liot, but we’re so proud of how he’s turned his strug­gle into some­thing pos­i­tive and thrown him­self into cen­tre stage,” en­thuses De­siree.

Since his di­ag­no­sis, El­liot has gone on to win awards in drama and theatre sports, and is now keen to carve out a ca­reer on the stage.

“My mes­sage to ev­ery­one is, if you have a chal­lenge in life, use it to your ad­van­tage,” El­liot says with his trade­mark grin. “Keep go­ing, chase your dreams and don’t let any­thing stop you.”

A break­through! El­liot un­der­go­ing a “life-chang­ing” 30-minute pro­ce­dure at the Prince of Wales Hos­pi­tal in Syd­ney, where he had ra­di­a­tion treat­ment on his pi­tu­itary.

Left: De­siree, Shane and Kennedy are de­lighted El­liot has come out of his shell. “He’s thrown him­self into cen­tre stage,” says his proud mum. Be­low: With best buddy Evie.

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