A community has rallied around to raise funds for the future complex needs of a little "smiling" boy who is devastated by the death of his adored mother.
Milo Poblocki (11), who is one of only 30 in the world to be diagnosed with a rare life-limiting condition, cannot quite comprehend why his beloved mother is not around any more.
Alicja Sokolowska, who campaigned fervently for her son's health treatment, died last month aged 38 after being diagnosed with cancer.
In recent years, Alicja and her husband, Arek Poblocki, raised €50,000 to bring Milo, who has Leigh's Syndrome, to Philadelphia for life-saving treatment.
While there Milo, who has modelled for a Dunnes Stores range of specialised clothing, was diagnosed with the additional rare mitochondrial disorder Mabry Syndrome.
He cannot walk, talk, move or sit but is known around his town as the little boy who is always smiling, despite being in constant pain.
Mitochondria are responsible for creating more than 90 per cent of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell and cell injury and even cell death follow.
"For those of you who have a child that you would do anything for, think about the prospect that they may not be able to survive to learn what life is or how beautiful it is. It's frightening," said Alicja during the fundraising drive.
"Despite his pain, he tries to smile every day and send around his enormous and amazing positive energy that infects everyone around him. The disease hasn't yet robbed him of his smile."
However, that smile has dimmed lately with the loss of Alicja. Now the community of Kells, Co Meath has decided to help Arek and his older son, Livio (12), in their grief by ensuring they have enough money for the continuous needs of Milo.
A Facebook post written on behalf of Milo said: "My hope was diminished the day my beloved Mummy passed away to heaven. My mother who fought so much for me, who did everything to make my life colourful, she understood me so well.
"She sacrificed so much to make me healthier, happier, she gave me so much, and in all her unconditional love she probably forgot about herself and her own health. It's too late now".
Zuzanna Hodur of the Milo and Family Support Committee said that Alicja's deep love and fearless determination to help her son had touched everyone who met her.
"She was beautiful inside and out and would do anything to give Milo and indeed her other son, a better chance of life.
"Unfortunately, she was diagnosed with stage four cancer last year and passed away last month. Before she died she told Livio to finish college and Arek to mind Milo as much as possible.
"The whole family is just devastated. Alicja was Erek's soulmate and they came here from Poland together to build a new life, which they did.
"Milo can't quite understand where his mam has gone or why she isn't around. He gets very emotional when he sees a picture of her. She had been there constantly by his side and now she isn't.
"So we decided to come together and set up a GoFundMe page to raise enough money to help Arek meet the needs of Milo who has to get private physiotherapy among many other things.
"We can't bring Alicja back but we can use the love and determination she had to continue to help her son."
The GoFundMe page can be accessed at gofundme.com/f/milo-and-family
