RAISING FUNDS: Cameron and Heidi Phillips with daughters Ela and Ayla and son Digby. Picture: Contributed
RAISING FUNDS: Cameron and Heidi Phillips with daughters Ela and Ayla and son Digby. Picture: Contributed

How rural family is making a difference after rare diagnosis

LESS than a year after a Taroom couple's youngest son was diagnosed with a rare medical condition the family is determined to make a difference.

It was a tough time for Heidi Phillips as a parent when her then 7-month-old son was suddenly unwell after contracting a virus.

Digby, Heidi and Cameron's youngest child, was diagnosed with a rare Auto-Inflammatory condition known as PLAID Syndrome (Phospholipase-C gamma2 Immune Dysregulation).

Now, 11 months on, the resilient family is close to a $65,000 fundraising target to assist doctors conducting research into the rare condition.

PLAID Syndrome is a lifelong condition which leaves the body unable to turn off the inflammatory process.

Ms Phillips said this causes multi-system organ inflammation, with symptoms including skin rashes, joint swelling, extreme gastrointestinal upset, periodic fevers and on occasion unpredictable 'flare'.

"They can last from seven to 10 days where Digby becomes lethargic, intolerant to food and despondent."

Relying on a daily injection to prevent these symptoms, Ms Phillips said this treatment has helped Digby live a normal life so far.

"He's turned a corner and he's able to thrive again," she said.

"They were quite significant and severe, the symptoms."

Heidi said while the worst-case scenario of Digby succumbing to the illness remained a possibility his immediate future appeared bright.

"It's hard to say with that because the doctors are unsure of his longevity," Ms Phillips said.

"There's lots of different [things] that could happen.

With about $55,000 raised for the Children's Hospital Foundation to assist in researching PLAID syndrome, the Phillips family want to do as much as they can to help Digby and other families in the same situation.

"It's a figure we had in mind, getting to that will be able to give the Queensland Children's Hospital Rheumatology and Immunology Department some funds to begin research into auto-inflammatory disorders," Ms Phillips said.

"[We want to create] awareness that these conditions are out there and reasonably unknown at the moment.

"We'll get this money to our doctors so they can begin and if they need anything further we'll consider it."

The family still makes quarterly visits to Brisbane for check-ups.

To donate to the Phillips family for Digby go too https://chf-community.everydayhero.com/au/digby-s-destiny

SOLDIERING ON: Despite suffering from a rare auto-immune condition, Digby Phillips continues to live as normal life as possible.
SOLDIERING ON: Despite suffering from a rare auto-immune condition, Digby Phillips continues to live as normal life as possible.