Grace Thompson's family are fighting to reverse a decision by the NHS not to cover the costs of her treatment.
The family of a four year old Newbold girl, who suffers from a degenerative brain condition are desperately trying to gain access to a treatment, which could extend her life by decades.
Grace Thompson suffers from a rare illness called Batten disease which is a form of childhood dementia
Samantha Barber from the Batten Disease family association explains how it affects those who suffer from it;
"It's devastating to the families, not to underplay it at all.
"The symptoms of the disease include dementia, epilepsy-with really severe multiple seizures, loss of speech and sight loss which then leads to blindness.
"Eventually, it results in total dependency on the care giver."
Currently the drug which treats the condition isn't available for use in England, because the group which approves treatments-known as NICE-say it doesn't provide value for money.
But Grace's mum Izabela is urging them to re-think their decision;
"I'd like them to act fast, to give her treatment now and talk about money in the meantime while she's having the treatment, because Grace hasn't got time.
"Without this treatment, Grace will die, which for me, is outrageous."