Now Calvin Greene is championing a Christmas campaign for the Irish charity that has supported his family.
Calvin, who turns 11 tomorrow, has voiced a new campaign for Jack & Jill, in which he talks about what he and his sibling are looking forward to this Christmas.
"For me the best thing about Christmas is spending time at home and playing with my toys. My little sister Amelia is five years old and loves to play with her sensory toys too.
"Our Jack & Jill nurse helps us a lot by giving my mam some time to herself as my sister needs 24/7 care. So please donate what you can for the 400 children across Ireland who need Jack & Jill this Christmas. Thank you," Calvin says.
It's the latest kind gesture from the youngster, according to parents Deborah Greene and Wayne Somers.
"We've been through a lot in the last few years," said Deborah.
"There's been a lot going on. But he just gets on with it and he's happy to be a part of it for Amelia. He's brilliant with her - brilliant with feeding her, he knows what to do.
"So it was nice for him to be getting to do the ad. He was delighted and a good few people have heard it."
Amelia appeared to be thriving like a typical little girl until her family first noticed some issues when she was a toddler. She has since lost her speech and much of her movement as doctors continue to access Amelia. They are currently awaiting the results of further testing for the five year old, whose condition is complex.
"Our gorgeous little Amelia, who is five, has had so many challenges over her short life," said Deborah. "Since she was two and a half, Amelia started having epileptic seizures - up to 30 a day - and the consensus from her medical team was that our beautiful little girl had a global developmental delay, with no specific diagnosis.
"A recent MRI showed brain shrinkage and we are awaiting further tests. Amelia is non-verbal and cannot walk or sit, requiring 24/7 care. We have been on an emotional rollercoaster as, without a diagnosis, there is no clear prognosis for Amelia.
"She has epilepsy which is uncontrolled by medication so that's kind of our main issue at the moment. Since she was diagnosed in May 2019, she's never been seizure free, she's had seizures every day."
Amelia appeared to be hitting all of her milestones in early life and her family had no concerns in the early days.
When she had her developmental check at the age of one, it was flagged that her muscle tone was quite weak and that was investigated but there were no huge concerns as the little girl was otherwise doing well.
"They were saying: 'Let's see how she goes'. She still had the normal baby stuff, she still had her words like 'mama' and 'daddy'. But when she was one and a half, she used to look at me, like in a stare. I mentioned it to my doctor and we went to the paediatrician and they did an assessment test.
"She was coming in like an eight-month-old baby instead of a year and a half. She kind of regressed then from a year and a half onwards. All the words stopped when she was two. That was her last time to say anything."
Doctors are still working to get a complete diagnosis, which is often challenging with children like Amelia. Even her neurologist has told the family they haven't come across many children like her and that her condition is complex.
Amelia is a very affectionate and sociable little girl and still has plenty of her trademark big, expressive smiles for her loved ones and those in her community when she's out and about near the family home in Lucan, Co Dublin.
"She's great for socialising - she loves being out on her buggy and looking around at different people and kids. And she's always happy, she's never sad. When she's sad, you know there's something wrong because she doesn't cry - she's just a happy little girl."
Deborah says she, dad Wayne and Calvin were delighted to front the Irish charity's 'Home for Christmas' campaign after experiencing first -hand how it has greatly benefited family life.
"The campaign aims to keep children home for Christmas and out of hospital by providing home and respite nursing care for children with severe to profound neurodevelopmental delay and their families.
The family first came into contact with Jack & Jill when Amelia was two. "The social worker down on her pre-school had mentioned it to me, a few mammies had mentioned it as well.
"She was in the hospital when they [first] came in to visit us so it was great to have that bit of time to relax and catch up on me.
"I get 20 hours a month and I can use for whatever suits, I tend to do five hours a week.
"I get to do the shopping or bring Calvin out. Having someone to call on in Jack & Jill, who understands and gives expert advice and guidance, is amazing."
The Somers family is supporting Jack & Jill's Home for Christmas campaign. Gifts range from signature scented candles designed by Paul and William Costelloe, to limited edition signed prints from Jack & Jill's much-loved Incognito art sale.
To purchase a gift, or to make a donation, visit