Step-mother of a teenager with MND says "time is of the essence" as they call for access to a drug
The family are walking from Hampshire to London to campaign for access to the drug and are set to finish today
Last updated 28th Jan 2026
The family of a 19-year-old girl with motor neurone disease say "time is of the essence" as they call for access to a drug which could slow the affects of the disease.
They are walking from Hampshire to London and set to finish later today by delivering a petition to Parliament.
Lillia Jakeman, from Romsey, has a rare form of MND which could be slowed by a drug called Tofersen, which is only available in certain places.
Rachel Jakeman, Lillia's stepmother, said: "We're pretty exhausted and poor Lillia is mentally and physically worn out.
"Not least because she is obviously battling the diagnosis of MND and is quite disabled as a result anyway.
"She's in a wheelchair, she's lost the function of her fingers, she can use her thumbs, but time is of the essence.
"The fact that we've been fighting since last August to get the treatment, too.
"She describes it as not knowing day by day if she'll wake up and some other function will be gone.
"It's criminal to me that we've had this fight for six months."
Ms Jakeman's telling us how Lillia is feeling.
She said: "She feels like she's in this sort of limbo land.
"But it isn't really limbo because she continues to deteriorate.
"It's limbo in the way that she's waiting for this drug and she can't live a life because everything seems to revolve around that."
The family have been walking from the Southampton General Hospital since Friday 23rd January and will finish at Westminster tomorrow.
Tofersen, made by Biogen, has been shown to slow and, in some cases, even halt the progress of MND for those with SOD1.
The family hopes the walk raises awareness of the situation and encourages the government to take action.
A spokesperson for University Hospital Southampton, said: “Like all NHS Trusts, we are facing challenging times and are required to live within our financial means.
"While this drug is currently being offered for free by a manufacturer through an early access programme, unfortunately we have not received any funding to pay for the increased service capacity we need to safely deliver this treatment and closely monitor a patient’s ongoing progress.
“We have therefore made the difficult decision that we are unable to provide Tofersen at this time, because doing so would mean taking resources away from other patients.
“We understand this will be deeply disappointing to families affected.
"The Trust will work towards being able to offer this treatment as soon as possible, if and when it is approved by NICE and funding is made available from NHS England.”
We've reached out to the Department of Health and Social Care for a response.