TIME is running out to send a six-year-old girl with a terminal brain tumour abroad for pioneering treatment which may prolong her life.

Lily Mckelvey was diagnosed with an extremely rare tumour which developed in her brain stem.

The first sign anything was wrong was when she started being violently sick in the mornings.

Last month, Lily was diagnosed with the rare condition called diffuse intrinsic pontine glioma (DIPG).

Fewer than 30 children are diagnosed with it in the UK every year.


Hope - Lily and her mum Elizabeth

Following Lily’s diagnosis, doctors told her parents, Jack and Elizabeth, their daughter’s life expectancy was between just six and nine months.

With treatment for DIPG no longer available in the UK, the couple launched a GoFundMe appeal in a desperate bid to raise £370,000 for treatment in America.

More than £153,200 has been raised by 5,000 donors since the couple launched the appeal last month - but time is running out to hit the target in time.

Elizabeth, 31, said the full amount of money needs to be reached by April.

She said: “The treatments we are looking at need to be carried out between 12 and 14 weeks after radiotherapy.”

Lily, who lives in Marks Tey, finished her 13 radiotherapy sessions at Addenbrooke’s Hospital, in Cambridge, earlier this month.

The sessions could potentially shrink Lily’s tumour.

Elizabeth said: “Lily needs to have an MRI scan on March 15, which will show if the radiotherapy has started to take effect and if there is any swelling on the brain after the radiotherapy.

“We’re hoping there won’t be any swelling so that we can proceed with the right treatment for Lily.

“But we are running out of time.

“If too much time has passed following her radiotherapy, doctors may not be able to take Lily on.”

Doctors in Cambridge have advised Jack and Elizabeth the cost of Lily’s treatment in the US - including travel - would be about £370,000.

The couple have been in contact with a specialist doctor from New York who can provide pioneering treatment for DIPG.


Decorating - Lily painting her baby brother-to-be's nursery 

Switzerland may also be an option for DIPG treatment.

Elizabeth added: “One of the treatment trials is in Switzerland, but Lily needs to be a certain blood group for that treatment.”

Her parents are trying to arrange a specific blood test at Addenbrooke’s Hospital.

“If Lily’s blood type matches the type needed for the treatment, there is a chance she may be treated there,” Elizabeth added.

“The treatment in Switzerland only potentially works on a specific blood type.”

She added: “Right now we are looking into a lot of treatments and they are all about the same cost, it’s just about finding the right one for Lily.”

While the family waits for the MRI scan, they have decided to start decorating Lily’s baby brother’s nursery.

Elizabeth told Lily she was going to be a big sister in December before she was diagnosed with a tumour.

Her brother is due this summer, and Elizabeth said Lily cannot wait to meet him.

Elizabeth added: “We just want to raise awareness about Lily’s story and we are under a time limit.

“Last month doctor’s told us Lily’s life expectancy was six to nine months.

“The deadline for treatment is the end of April.

“We are so grateful for the donations, but we have a long way to go.”

If they cannot fly Lily oversees for treatment by the end of April, they will have to review their options.

“We have not thought about it yet.

“If we cannot raise enough money, we will sell our house, or do whatever we can,” Elizabeth added.

To find out more about Lily’s fundraising appeal or donate, visit bit.ly/3qEIouG.