Five year old Milo Browne, from North Shields, suffers from a condition so rare that doctors have named it after the youngster.
Milo, the son of Laura Davidson and Stephen Browne, and little brother to Felix and Mia, suffers from delayed physical and mental development. He is unable to sit on his own without being fully supported, has no head control, suffers from uncoordinated movements, and is unable to hold his body weight.
His parents have been told that Milo will never have the ability to sit unaided, crawl, walk, and may never even talk.
Although the full extent of Milo's condition is as yet unknown, the symptoms are not. He is being treated for M3BHA - which only affects around 9 people worldwide, but medics say his disorder is much more severe and is so unique, that doctors have labelled it “Milo’s Condition”.
Milo's main way of learning is through play with sensory play being vitally important to his development. Following several years of fundraising, Milo's parents Stephen Browne and Laura Davidson worked tirelessly and raised enough money to create a fully adapted sensory room for Milo to learn and to help aid his development. The community rallied to raise funds, enabling the family to install fibre optic lights, a projector, a wet room, hoist and specialist play equipment in a bid to give Milo the chance to relax and to provide the stimulation he desperately needs.
In a devastating turn of events, the family were left distraught after thieves ransacked their home, destroying Milo's sensory room, which the family and volunteers had worked so hard to raise the money to install. Raiders broke in through the back window of the family's home, taking valuable items and damaging irreplaceable mementos.
Experia visited the family and upon hearing more about Milo’s needs and what the family had been through, created a bespoke wedge, which was designed and produced to suit Milo's specific needs (as they’d been unable to get this elsewhere), provided a box of sensory toys to replace some of the stolen items, and donated a Portare; a portable sensory unit.
The Portare was specifically produced for Milo after Stephen and Laura expressed to Experia their wish that more families in need could be able to benefit from the sensory equipment which Milo finds so invaluable.
The Portare's portable nature and range of sensory features makes it ideally suited to being loaned out to other children with a wide range of abilities and conditions. Included within the Portare is an integral LED Bubble Tube, fibre optics, acrylic mirrors, plus an Aurora LED Projector, wheel rotator and a selection of our Experia 6 inch effect wheels (Balloon Extravaganza, Dawn til Dusk, Firework Bonanza, Outer Space and Tropical Reef).
The family will be loaning the Portare to other families in need in the future through the 'Our Milo' organisation they’ve so generously set up to help others. A sign on the side of the Portare reads, 'On loan from Our Milo'; a lasting testament to the Charity and the amazing little boy who inspires it.
Gareth Jones, Director of Experia, said: “We're delighted that the Portare will not only benefit Milo, but also many other children, thanks to the efforts and generosity of the family.”
This inspirational family are currently trying to raise money to buy a range of sensory equipment that can help other families. Laura said: 'After seeing how much Milo gets out of his, we want to raise as much as we can to help other children in the same position.'
Stephen adds: “When we started fundraising to help families with children with life-limiting conditions, we had great support from everyone.”
To date ‘Our Milo’ has raised around £20,000 through various fundraising activities undertaken by the family and an amazing team of volunteers.
If you would like to get involved or find out more about Our Milo visit: