Medical trial gives 'hope' to family of Carrickfergus schoolgirl living with rare condition

A new medical trial is offering hope for the family of a Carrickfergus schoolgirl who suffers from a rare degenerative illness.

Gracie Coates, 11, was diagnosed with the life-limiting condition Vanishing White Matter (VWM) disease as a younger child.

A form of leukodystrophy, VWM disease is a progressive condition that destroys myelin, the brain’s white matter.

Thought to only affect a few hundred people worldwide, VWM can leave sufferers unable to walk, talk or eat.

In July 2019, Gracie’s older brother Noah passed away at the age of 12 from the same condition.

The family have now been given a ray of hope after Gracie was offered the opportunity to participate in a medical trial in Holland.

The trial will evaluate whether a particular drug, Guanabenz, is effective in slowing progression, stabilizing or even improving the brain white matter abnormalities in VWM.