A 4-year-old girl who is unable to walk, talk, or eat without a tube still hasn't be diagnosed with a disease despite being tested for 10,000 conditions by doctors.
Makiyla-Rose Roberts also suffers from epileptic seizures so severe they stop her breathing. She is registered blind, and has no muscle tone - meaning she cannot hold up her own head. But after a three-year study in a bid to discover what her condition is, doctors still cannot determine what is causing her problems.
Her mum Kayleigh, who is 36 weeks pregnant, said this means doctors have been unable to test her unborn baby to see if the child could be born with the same condition. She said: “It is hard to ask for help when there is no name for what she has got.
“There are forms to fill in for her disability living allowance and you have to explain what the disability is, but we have no name for it.”
Makiyla-Rose is currently living in the front room of the family home in Wirral where her parents have to carry her from room to room.
Kayleigh said: “She can’t smile, she can’t laugh or talk, but I can tell when she is happy – you have to know her.
“My partner Dan and I do everything for her. She can’t do anything for herself, she is like a newborn.”
Little Makiyla-Rose is entitled to £30,000 for housing adaptations, but quotes for the architect's blueprints have come back £18,000 over budget, Kayeligh wrote on the family's fundraising page
She added: “We don’t know what the future holds because we don’t know what condition we are dealing with.
“They know that she won’t live a long life.
“But I try not to think about that everyday because that little girl is my life.”