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‘When the doctor told us our son had a rare life-limiting condition our lives changed in a split second - then we found out our daughter has it too

Noah Coates (10) has a disease with no known cure that affects just 250 people worldwide, and now his little sister has been diagnosed with it as well. Their parents Sarah and Greg, from Carrickfergus, talk to Sophie Inge.

Published 22/11/2016

Family time: Greg and Sarah Coates with their children Noah and Gracie
Family time: Greg and Sarah Coates with their children Noah and Gracie
A younger Noah having fun with his sister Gracie
Mum Sarah, Gracie and her friend with the Disney characters
Fairytale day: from left, a special birthday party for Gracie with Cinderella and Prince Charming
Young schoolboy Noah before his illness took hold

Some children dream of becoming a superhero; others of being transformed into a princess. Noah Coates simply wants to go outside and play like the other children.

For as long as he can remember, the 10-year-old from Carrickfergus has suffered from Vanishing White Matter Disease - a devastating genetic condition which destroys myelin, the brain's white matter that insulates and protects nerves.

The disease - an extremely rare type of Leukodystrophy estimated to affect just 250 people worldwide - can leave sufferers unable to walk, talk or eat. It can also cause spasticity, reduced cognitive ability, blindness and deafness.

Most children die before reaching their teens and there is no known cure.

Noah's sister, Gracie (6), also has the disease, but is so far relatively symptom-free and unaware that she has it.

For the children's parents Sarah and Greg, who are both aged 39, each diagnosis has been devastating - and their lives have permanently altered as a result.

They had never heard of the disease when Sarah found out she was pregnant with Noah.

"I was just ecstatic because I just wanted to be a mummy," she says. "Noah came two weeks early, but when he was born everything was fine and there were no symptoms. I just thought he was perfect - as you do."

He continued to develop normally and even began walking at 11 months. But when he was 13 months old, Sarah and Greg noticed that his walking pattern wasn't quite right.

An X-ray came back all clear but Noah continued to have problems with his legs.

"When he was about two-and-a-half, he was in the room next to me and had a wee fall - not even enough to leave a mark," recalls Sarah.

"I lifted him up to comfort him, but when I put him back down again he couldn't put any weight on his legs."

Thinking that he might have broken it, she took him straight to the Royal Victoria Hospital in Belfast. But by the time they arrived he seemed better again.

Then, one morning - when Sarah was eight months' pregnant with her second child, Gracie - he couldn't walk at all.

Greg and Sarah rushed him to hospital, where he had a CT scan. As they anxiously awaited news, they were still optimistic that they would be able to take their son home.

"There had been talk of a lack of oxygen at birth and maybe slight cerebral palsy, so I remember saying to my husband: 'Well, if that's the worst then we can live with that'," says Sarah.

"But when we were called into the room, we realised there were too many doctors and nurses for there to be any chance of sending us home. The doctor explained that Noah had a very abnormal brain scan. We thought 'Does that just mean he'll have difficulty walking?' But then she said he had a life-limiting condition called Leukodystrophy.

"It was horrendous. Our whole life changed in a split second. We'd been looking forward to having our second baby - our wee daughter - and everything just changed."

Noah's scans were sent away to a specialist in Holland, who diagnosed Noah with Vanishing White Matter Disease.

More heartbreak followed, when Gracie, who had a one in four chance of inheriting the disease, was also found to have it. In fact, the siblings are the only people in Northern Ireland known to suffer from the disease.

"It was just devastating," says Sarah.

"We'd been really praying and hoping that she didn't have it."

She and Greg have decided not to tell Gracie anything until she starts to develop symptoms, as they fear the news would be too distressing for her.

"It will be harder for her because she'll be looking at her brother and seeing everything that he's going through," says Sarah.

In a tragic irony, Gracie often pretends to suffer from the same symptoms as her brother - in order to make him feel better. Meanwhile, Noah's condition is deteriorating rapidly. He is now unable to walk, eat or go to the lavatory and has difficulty breathing.

"The disease has now gone into his brain stem, which means that he's gone from walking at this time last year to not being able to get out of bed," says Sarah.

There is currently no known cure for the disease, but research is being conducted both in Israel and Holland.

So far, the family have travelled several times to Holland for consultations.

Daily life is a struggle, but Sarah says their faith in God has been essential and helped them to cope.

"We have a good Christian faith, and we talk to Noah a lot about heaven - not in a frightening way.

"He certainly has an understanding that when we die, we go to heaven and that he will be made better and his body whole.

"There have been times when he's said 'Mum, I think I'd like to go to heaven now', because his idea of heaven is somewhere he'll be able to run, fly and jump. It's just heart-breaking."

Greg is employed as a team leader in the lab department at Schrader Electronics and, despite the constant demands at home, Sarah still goes to work twice a week at the charity Women's Aid.

"For me, it's just a place where I can go where I'm not talking about medical stuff," she explains. "It sounds strange, but it's like a haven for me because it allows me to be distracted.

"Whereas when I go home, there are a lot of professionals to deal with.

"We've been really blessed with all the support we've received [from professionals and friends], but it's still hard when you have people in your home all the time."

She's especially grateful to her friends, many of whom have raised money to help the family make life more comfortable for Noah and Gracie.

Last week, five friends from Sarah's church organised a gala ball at the Europa Hotel in Belfast to raise money for the family, which was attended by around 500 people.

"There is a lot of bad stuff happening in the world, and to think people are even coming out to pray for us has been overwhelming. It's really helped to give us a lift."

In September, the family were supposed to travel to Disney Land in Florida, thanks to the Starlight Foundation, a charity which grants wishes for seriously ill children.

However, Noah's deteriorating condition has made this impossible.

As a gesture of good will, Gabrielle Riddiough, a local 'princess' impersonator, last Sunday organised a special princess-themed birthday party for Gracie, who turns seven in December.

During the party, Gracie got a full princess makeover and had tea with several other Disney princesses and Prince Charming before they were joined by her friends.

Noah, meanwhile, got a FaceTime call from his hero, Captain America.

"We would like to offer our most heartfelt thanks to Gabrielle and the other princesses and prince and everyone involved in making Gracie's birthday so special," says Sarah.

"It was really a party for Gracie, because a lot of attention goes to Noah. His needs are a lot higher, so sometimes she feels a wee bit left out.

"With her condition, she's limited as to the things she can do because of the safety aspect - so they're going to take a bit of time to spoil her."

At the moment, Gracie still dreams of becoming a princess, but she could soon be experiencing the same symptoms as her big brother.

Although there is no cure for the disease, Sarah and Greg will never give up hope.

"We still believe in miracles - we've witnessed them every day through the goodness of people," says Sarah.

"And we still believe that God can heal both Noah and Gracie.

"But if it's not here on Earth then we will continue to trust in God's goodness and love."

For more information, visit: http://noahandgraciecoates.com. Donations to help find a cure for the disease can be made to savingchloesaxby.com

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