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.
Gracie Coates.

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.

Gracie and her big brother, Noah.

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.

Gracie and Noah's mum, Sarah Coates said: "If all goes well, it means it could potentially slow down the progression of the disease. This for us is the hope that we have been praying for.

"We will need to stay in Holland for up to eight weeks for the trial; this will be difficult being away from home, but if it works could be life changing for Gracie."

The local mum asked for continued prayers for the Coates family that the trial will be a success.

"It will run over four years in total, so we will be back and forth to Holland during that time," Sarah added.

Meanwhile, a fundraiser in support of the family has raised over £3000 so far.