Scottish parents 'absolutely distraught' as son diagnosed with same deadly disease as little sister

Claire, 34, and Martin Greenwood, 35, have been left distraught to learn their son Liam, 11, has been diagnosed with Pontocerebellar Hypoplasia (PCH) - the same deadly disease his sister Jessica, 9, has. Picture: SWNS

Claire, 34, and Martin Greenwood, 35, were "absolutely distraught" when medics told them that both their children share the same brain attacking illness.

Jessica, nine and Liam, 11, have both been diagnosed with Pontocerebellar Hypoplasia (PCH) - a condition caused by mutations in certain genes passed on from parents.

The illness has left Jessica unable to walk, talk, swallow or communicate and receiving palliative care at Robin House Children's Hospice in Balloch, Dunbartonshire.

But Mum Claire said her world has been destroyed after finding out son Liam also has the rare condition.

Doctors told the couple PCH is affecting two parts of the brain in both Jessica and Liam, with the average lifespan for a child with the condition just 10-12 years.

Claire, from Irvine, North Ayrshire, said: "It's been discovered through genetic testing that Liam also has PCH.

"We are just absolutely distraught and still trying to wrap our heads around it.

"Neither of them has had a proper diagnosis, until now and then we get the worst possible news.

"It is hard to accept that both our children are dying.

"I don't know how we are coping, we just have to.

"I've had dreams about them being able to walk one day and getting their own wee flat when they grow up and now those dreams have been totally crushed.

"Our whole family is completely shocked and distraught."

Claire said doctors are unable to tell them how long they have left with their children.

The mum-of-two added: "The diagnosis basically means both Liam and Jessica have two parts of their brain which are affected and their condition will deteriorate over time but we won't know how long we have left with them.

"At the moment Jessica is deteriorating every day.

"She is receiving palliative care and is showing no signs of getting better.

"Liam has been making progress all the time and just last week took his first proper steps all by himself, so to be told that we are going to lose him too has been so, so hard.

"We can only hope to have them with us for years to come, but there is just no way of knowing.

"The average life span for children with PCH is 10-12-years-old.

"Jessica is already at that age and stage of her deterioration so we can only hope we have some time left with her."

Claire and Martin said they are determined to make all their children's dreams come true in the time that they have left.

The family is trying to raise £10,000 to purchase the life-changing technology called Eye Gaze which will help Jessica communicate with her parents.

The software is uploaded onto an iPad and it allows Jessica to select a phrase or sentence by pointing her eyes towards it.

It is similar to the machine used by physicist Stephen Hawking, who had motor neurone disease, which allowed him to select a word by moving his cheek.

Claire said: "We are just going to try to do as much with them as possible.

"They deserve to do whatever they want.

"We are determined to make as many memories as we can because eventually, that is all we will have left."

To donate to the family's fundraising appeal visit their JustGiving page here.