NO-ONE CAN STOP ME NOW!
Cushing’s disease teen
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.
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.”
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.