Mackay toddler faces life-threatening disorder

MOTHER of a sick one-year-old aims to run a charity art auction but needs the help of the Mackay community.

One-year-old Grayson Little. Picture: Contributed

A LITTLE boy from Mackay suffering a rare disorder risks dying if he goes through a procedure which could greatly improve his quality of life.

But Grayson Little's parents Rachel and Leighton Little are determined to give their one-year-old son the best chance he can at living a healthy existence well into the future.

Rachel and Leighton at their wedding with little Grayson. Picture: Contributed

The toddler suffers from the one-in-a-million disorder dyskeratosis congenita, which has no cure and leaves him susceptible to internal organ damage.

The Little family have been residents in Mackay for three years, Mrs Little was a Kindergarten teacher at Good Start, but left to care for her ill son.

Mr Little still works to support the family and runs a diesel fitting business that sub-contracts to other businesses.

Grayson's bone marrow is at risk of failing, which could lead to an early death, but also predisposes him to cancer, anaemia and other conditions.

The disorder was only recently diagnosed by doctors, but Grayson has had worrying issues with his bone marrow for the past five months.

Found within the bones, marrow is a semi-solid tissue where blood cells are produced, and without it the human body can't produce white cells to fight infections.

It's also crucial to the production of the red blood cells needed to carry oxygen and platelets needed to stop bleeding.

Now, Grayson's parents are considering whether to proceed with a bone marrow transplant, which would likely fix the toddler's marrow problems and stabilise the amount of blood in his body.

"That's if he can survive it," Ms Little exclaimed.

Grayson Little getting a piggyback ride from dad. Picture: Contributed

There's a 20 percent chance Grayson could die as a result of the procedure and there's further risk his body will simply reject donor marrow.

"It's a risky procedure to take, but it gives him the best chance to live a long, risk free childhood," Ms Little said.

"We believe that this is our best option to correct at least this part of the disease."

Grayson is the second child of the couple. Their first son Cooper was stillborn, doctors assume due to the same ailment which plagues Grayson.

Even if the procedure does go according to plan, Grayson's organ problems will likely continue.

"The issues with internal organs are quite unknown and unpredictable," Ms Little said.

Though Grayson has a large extended family rallying behind him, Ms Little admitted "it's hard to deal with the disorder at the moment".

She described Grayson's illness as "quite unknown and unpredictable", when it comes to how his organs will cope.

Ms Little said few doctors are aware of how to treat dyskeratosis congenita, particularly in a patient so young, which adds another layer of stress to an already taxing situation.

Still, Grayson's response - or lack thereof - regarding his incurable disorder provides some relief for his family, for now at least.

Ms Little said Grayson simply ignores a smattering of bruises on his tiny body, continuing to play with his toys and crawl around seemingly without a care in the world.

She said her son's quite the crowd pleaser and gets a real kick out of being silly and making those around him laugh.

"Without the nasal tube you wouldn't even know he was sick," Ms Little said.

"He's always blowing bubbles or pretending to cough to make others smile at him."

"He's just being a kid and doesn't seem to notice the extra stress on his life right now."

Mum and Grayson matching in maroon. Picture: Contributed

In support of Grayson and others living with "DC", the Little family want to organise an art auction, with all proceeds going towards researching the condition

Ms Little has reached out to artists in the Mackay region to donate their work over social media and received an "overwhelming response".

But she's hoping to wrangle up more donations ahead of a likely charity event in late June, with all proceeds going towards the DC Outreach Committee and the Million Dollar Bike Ride.

"Grayson is a determined little boy, so we're hopeful he will pull through anything we need to put him through," Ms Little said.

To follow Grayson's journey on social media visit 'Little Grayson's Journey with Dyskeratosis Congenita' on Facebook.

Originally published as Mackay toddler faces life-threatening disorder