A wheelchair-bound boy who is battling a rare condition is the new face of a specialised clothing range.
Milo Poblocki is just one of only 30 people worldwide to suffer from Mabry syndrome, a genetic disorder.
The condition was diagnosed during the eight-year-old’s recent trip to the US for treatment, without which his mum Alicia said he wouldn’t have survived another winter.
Milo has to eat through a tube and cannot walk, talk or move.
But despite being in constant pain, he is known around his home town of Kells, Co Meath, as the little boy who is always smiling.
The clothing range, which is exclusively available online at Dunnes Stores, includes access points for peg and feeding tubes and pop studs to give parents or carers easier access to a child with incontinence issues.
Kells mum Alva Cullen first designed vests and nightwear for the outlet in 2016 but her new range consists of complete day outfits in pink or blue.
She said: “I’m part of the Kells-based Special Hands Club which organises events and activities, such as Zumba, and kickboxing for children with additional needs and their families.
“We have about 200 members and their families from all over Meath and parts of Cavan and Monaghan too.
"A few years ago, some parents came to me asking if I could organise sewing classes so they could learn to make alterations to their children’s clothing
“I thought those parents had enough to be doing without this additional task so I emailed Dunnes Stores asking them to consider clothes for children and teenagers with special needs and they jumped at the chance.”
Alva, whose 12-year-old daughter Sorcha has Down syndrome, added there has been a change in people’s perceptions about disabilities.
“In this range there are super soft leggings with a higher waist and care labels which are hidden.
“The tops have a wider opening for children with shunts or hydrocephalus and they also have access for peg tubes.”
The clothes have been a huge help to Milo’s mum Alicia Sokolowska, especially before his new treatment when he was in constant debilitating pain.
She said: “Alva’s range has made life so much easier. I can remove the peg through a discreet pocket in the top and because the jacket opens at the front and back, I don’t need to lift him from the wheelchair to put it around him.”
