• The Reynolds family still manage to laugh and smile each day. (NITV)Source: NITV
Single mother Narelle Reynolds is determined to find a cancer treatment for her son, whose intellectual disability has given him an acute fear of hospitals.
By
Ella Archibald-Binge

Source:
The Point
31 Aug 2016 - 1:29 PM  UPDATED 31 Aug 2016 - 1:29 PM

The Reynolds family know how to get through hard times. 

"We help each other and have a sense of humour to make each other smile and laugh each day, otherwise you don't get through it," explains eldest daughter Tamie.

Over the years, the family of five has been at the centre of a storm that refuses to settle down. 

Two of the Reynolds children have severe intellectual disability, caused by a genetic condition called Fragile X Syndrome. Two have been diagnosed with cancer. 

Luke, aged 30, has both.

Due to his disability, Luke has an acute fear of hospitals, which makes it near-impossible for doctors to diagnose and treat his condition.

On three occasions, doctors have abandoned attempts to perform a biopsy after Luke lashed out at medical staff.

'He thinks that the people coming close to him are going to harm him, so he will try to resist first and then he will attack.' 

"We try to brief him what we are going to do, he's quite happy," says family GP Dipesh Hapani.

"Once he goes there, and someone comes near to him - and because people with Fragile X have got significant anxiety to unfamiliar surroundings - he thinks that the people coming close to him are going to harm him, so he will try to resist first and then he will attack."

Initial testing shows Luke has papillary thyroid cancer. 

If this theory is correct, and Luke can't have surgery to remove the cancer, he could die.  

Now the close-knit family is fighting to save Luke's life, and each have their own role to play. 

Narelle

Narelle Reynolds is a  54-year-old single mother living in Dubbo, New South Wales. 

The eldest of seven children, she was raised on the Aboriginal mission in Condoblin, during a time when Indigenous people were segregated in schools and cinemas. She began work at age 12, picking up sticks to earn extra money for her mother and father.

Four decades on, she's a mother to four adult children. Her two sons, Justin and Luke, have an intellectual disability caused by a genetic condition called Fragile X Syndrome (FXS). Eldest daughter Tamie is mildly affected by the condition, which has also been passed on to her seven-year-old son Ryan. Youngest daughter Casey carries the FXS gene. If she has children, there's a 50% chance they'll be affected. 

WATCH THE FULL STORY: 

A trained nurse, Narelle has worked in the health and disability sector, coordinating service provision for Indigenous families. Recently, however, she stopped working to care for her sons full-time. 

With son Luke's health deteriorating, she's terrified her only choice will be to watch him die.

"I wish he was a baby again, so I could walk him in, put him on the table and say take it out. Do whatever you've got to do. The last thing I want is to see my son die." 

Tamie

Tamie, 37, is the eldest of the Reynolds children. 

A few years ago, she was diagnosed with leukemia, relocating to Sydney for life-saving treatment. 

A one-off drug trial saved her life. She's now in remission, but there's a chance the cancer could come back. If it does, she'll require a bone marrow transplant. She's on an international donor list, but so far hasn't found a potential donor. 

Tamie is mildly affected by Fragile X Syndrome, which is generally less severe in women. Her seven-year-old son Ryan inherited the gene. 

Justin

Justin, 35, "loves the Lord and he loves to sing", says mum Narelle. 

"He likes to talk to all the old girls - that's Justin. And I've always said he was a gentle giant, but we don't cross with the bear."

Justin began to show signs of Fragile X Syndrome when he was six months old. 

He had no muscle tone in his hands, and was unable to sit up or grasp things. 

Initially, Justin was diagnosed with autism before a chance blood test revealed he had FXS.

Narelle took steps to improve Justin's development, encouraging his speech by setting him up with an amplifier and microphone while watching his favourite show, Care Bears. 

Now, Justin still requires full-time care from Narelle and her daughters. 

Luke

30-year-old Luke loves rugby league. 

"Mad on the Broncos, Queensland - always going on about Queensland," says Narelle, rolling her eyes. 

Luke would often be seen on the sideline at local league games, supporting his beloved Westside club. For his 30th birthday last month, the team took him out for his first beer. 

But Luke doesn't go to footy matches anymore. His deteriorating health keeps him inside the house. 

Initial tests show it's highly likely he has papillary thyroid cancer. Under normal circumstances, it's generally curable through surgery, radiation and chemotherapy.

But Luke has an acute fear of hospitals. So far, doctors have been unable to conduct an invasive biopsy to confirm the cancer diagnosis. 

Even if the diagnosis is confirmed, Luke will require surgery to remove the cancer. 

If he does have cancer, and he can't overcome his fear of surgery, Luke could die. 

Casey

Casey is the youngest of the Reynolds children, and a carrier of the Fragile X gene. If she has children, there's a 50% chance they'll be affected. 

When sister Tamie was in Sydney for cancer treatment, Casey stepped in to take care of her son Ryan. 

She plays a vital role in helping Narelle care for Justin and Luke. 

WATCH : HOW IS FRAGILE X SYNDROME PASSED DOWN?