Fundraiser for Carrick siblings who suffer from rare condition

Noah and Gracie Coates.  INCT 42-720-CON
Noah and Gracie Coates. INCT 42-720-CON

A fundraising gala ball will take place next month in aid of two young Carrick children who were born with a rare and incurable condition.

Brother and sister Noah and Gracie Coates, who are aged ten and six, suffer from the genetic condition Vanishing White Matter Disease, a form of leukodystrophy.

The leukodystrophies are a group of rare genetic disorders that affect the central nervous system by disrupting the growth or maintenance of the myelin sheath that insulates nerve cells.

The disorders are progressive, meaning that they tend to get worse throughout the life of the patient.

Symptoms of Vanishing White Matter Disease can range from neurological deterioration, spasms, lethargy, and seizures, according to the United Leukodystrophy Foundation.

Unfortunately, the disorder can often mean life expectancy is reduced to teenage years.

Over the last 12 months, Noah’s condition is progressing even more quickly.

Noah and Gracie’s parents, Sarah and Gregg said: “We have now got different hopes and dreams for our children, and we continue to trust in God who gives them strength to get though each day, because tomorrow is not guaranteed to any of us.

“Noah and Gracie have amazing strength and have touched the lives of so many people who have met them. We will never give up hope and will continue to pray for a miracle or that a cure maybe found.”

Family and friends of the couple are holding a fundraising gala ball next month, with all money to go directly to the Coates family for any equipment they need at this stage.

The event will take place on Saturday, November 12 at the Europa Hotel, Belfast.

It will begin with a drinks reception from 7pm, followed by a three-course meal and live band entertainment.

Throughout the evening there will be various raffles and an auction compered by Cool FM DJ, Pete Snodden.

Tickets are priced at £45 and can be bought through Sandra Pyper Property Management, High Street, Carrickfergus or over the phone on 028 9335 1232.

Further information can be found at facebook.com/SandraPyperPM or on Noah and Gracie’s website www.noahandgraciecoates.com