Angelo & myself have been blown away by the generosity and support we have received since receiving Everleigh's official diagnosis. It has been suggested to us to start up a Go Fund Me page to make it easier for anyone who wishes to support Everleigh.

Everleigh was diagnosed with WOREE Syndrome on the 21st of December 2022. After waiting 9 months for her genetic testing results to get back to us, they devastatingly came back with a mutation on her WWOX gene.

Everleigh requires 24/7 1:1 care & 2:1 while traveling due to the risk of aspirating and choking. This makes returning to work near to impossible as Everleigh can not attend generalised daycare.

Everleigh experiences daily choking episodes, requiring constant emergency oxygen administration and re-positioning. As her condition deteriorates, it is becoming more & more difficult to leave the house and take Everleigh into the community safely. While also being completely fed via her NG Tube, as swallowing is unsafe for her.

WOREE Syndrome is so rare, there are less than 150 cases documented worldwide.

Everleigh is still currently on a handful of anti-epileptic drugs, to try to help with her 30+ seizures every day. While also continuing with her physiotherapy, OT & speech.

WWOX - related epileptic encephalopathy syndrome is a neurodevelopment disorder characterised by uncontrolled seizures, severe developmental delay, vision impairment and abnormally low muscle tone. Children have poor or no neck control, few to no voluntary movements and are not able to sit upright unassisted. While also having a significant feeding issue and a high risk of aspirating fluids.

The diagnosis itself is debilitating, Everleigh will never be able to voluntarily move, crawl, or eat unassisted and devastatingly have a shortened life.

There is no cure for WOREE Syndrome, only treatment to help manage some of the symptoms.

We thank you for your support <3