When Charlie Murphy returns home to Ireland from her life in London, she always sees changes in her six-year-old nephew, Reuben Neville.
“When I come home, I realise all that I miss when I’m away,” the Love/Hate actress says. “I was finishing college in Dublin and around a lot when Reuben was a little baby. It was such a lovely time.
“I come back from London now and Reuben is not talking yet, but he’s making more sounds and he’s signing more and using picture signs to communicate and I’m missing all that. I missed him walking. That feels crap, but it feels great to see him making so much progress.”
Charlie is the fourth child in the Murphy family of five girls and one boy.
Her sister, Lorraine, is the eldest and Reuben was Lorraine’s first child.
Reuben was diagnosed with Down syndrome at birth, and, as is always the way, the shock was intense for them. What we can forget, though, and I say it as a parent of a child with DS, is the effect on the wider family.
When a new baby is due and then joins an extended family, everyone has expectations of what that will mean. Then, when the words “Down syndrome” are uttered, those expectations are shattered and everyone has to reset their hopes and dreams — and to try not to catastrophise.
“It was a shock for everyone when Reuben arrived,” Charlie says, “and devastating because I didn’t know what his future would be.
“Everything you assumed would happen wasn’t happening and I remember feeling very lost for Lorraine and Ross — very helpless. I’m sure every family goes through that helplessness.”
When Reuben was born, Charlie couldn’t help but think of her late uncle Liam, her mother’s brother, who also had Down’s syndrome.
Lorraine also says when I speak to her that they thought of Liam fondly, but also wondered if Reuben’s life would follow the same path.
Liam, however, was the product of a very different time to Reuben’s, and, in a way, the Mission 21 film made by the Down Syndrome Centre, where Lorraine is communication and fundraising executive, is all about that.
The film, supported by FLYEfit, is about clarifying what it means to have DS, what children born with DS need, and what they can achieve.
Liam “never had a chance”, Lorraine says. He didn’t go to school, he never learned to speak properly.
Since Reuben came along, they have learned that Liam once knew a few words but lost them through lack of any intervention or education.
By the time his nieces knew him, Liam did not speak. He lived without a sense of purpose or a job.
“Luckily we live in a very different world now,” says Charlie — though she and her family know, through
Reuben and Lorraine’s work at the DS centre, that there is a desperation for therapies right across the country.
The Mission 21 film — featuring Charlie and stars including Imelda May, Amanda Byram and Keith Duffy, is launched today, exclusively, on independent. ie, ahead of wider release in time for World Down Syndrome Day on March 21.
Others appearing include Brendan O’Connor, Aidan Turner, Miriam O’Callaghan, Padraig Harrington, Gavin James, Lorraine Keane, Domhnall Gleeson, Una Healy and Kevin Kilbane.
Charlie hopes the film will encourage people to give to the centre, where children can get occupational, speech and language therapy.
There are also summer camps and preschool courses, including physiotherapy. New parents are supported and can feel part of a community.
With pressure on State services, the centre plays an increasingly important role for children with DS and their families.
Reuben attends at special Carmona Services in Dun Laoghaire, he is a big brother to Louis (5), and he’s a happy little boy, excited about approaching his seventh birthday.
Which is not to say that any of this has been easily achieved.
“When Reuben was born, when the news had sunk in,” Charlie says, “I then, naively, thought, ‘okay, this will be fine, we can do this’.
“But that was before I understood the wide spectrum of things that can come with Down syndrome. They’re the things that hit you sideways and that you really need support to deal with.”
When Reuben was just under a year old, Lorraine and Ross noticed him having small jerks that then turned into infantile seizures.
These are not uncommon in children with DS and, at one stage, Reuben was having up to 70 seizures a day.
Charlie looks back and wonders how the family got through it.
She recalls babysitting Reuben while he had a seizure, under strict instructions from Lorraine to record it as per the hospital’s instructions. Luckily, Reuben grew out of the seizures after a couple of years, but his development was delayed as result and that was hard to deal with — not to mention that Lorraine had Louis during that time.
With intense work and lots of therapies, Reuben is now making good progress. “And once he was over the seizures,” says Charlie, “the Down syndrome seemed like nothing by comparison!”
It’s amazing, both Murphy sisters say to me, what you adapt to as the new normal when it arises.
When the shock subsides after a baby is born with DS, it’s astounding how the new normal takes shape.
But what surprises most Irish families as life settles down is that there is a real struggle to get adequate services and therapies for children with DS.
“You get a shock at the start and you wonder, ‘what will we do?’ says Charlie. “But you work it out pretty quickly and you realise that you can do it and all of our family realised that with Reuben.”
And his progress is there for her to see every time she comes home.
The Mission 21 Appeal launches today in the Sunday Independent. The Mission 21 film can exclusively be seen today on independent.ie.
To make a donation to the Down Syndrome Centre and to aid its support for children with Down syndrome, text ‘DSC’ to 50300 to donate €4 or see downsyndromecentre.ie