A Rutland based child is to become the first in the world to receive groundbreaking treatment for an aggressive brain tumour in US drugs trials, but he needs your help raising the funds to cover accommodation, travel and drugs costs which amount to upwards of £4000 a month.

A week or so before his 10th birthday on the 5th of May this year, little Lucas Posey-Bottomley of Rutland was an active, friendly and popular young man with his whole life in front of him.

Lucas enjoying quality time with his mother (image courtesy of Lucas's family)

Then, one morning before school he became ill and as a result, he started losing his balance. Following several visits to his GP, he was referred to Leicester Royal Infirmary A&E Department where an MRI scan confirmed he had Diffuse Intrinsic Pontine Glioma (DIPG).

DIPG is a rare form of cancer that, in the main, affects children between the ages of 3 to 9 years. Only 20 to 30 children within the United Kingdom will be diagnosed with DIPG annually. It is a highly aggressive brain tumour located within the brain stem, in an area called the pons, which controls many of the body's vital functions. Symptoms generally develop rapidly prior to diagnosis and treatment is limited initially to steroids and thereafter radiotherapy.

Whilst radiotherapy will often alleviate many of the symptoms and allow an almost magical return to normality for the patient for a month or two, there is no known cure and a zero per cent survival rate, with death usually following within six months. Outward signs of the disease may include severe headaches and nausea, slurred speech, difficulty in swallowing, a drooping to the side of the face, inability to maintain balance, and unusual eye movements.

Of course, Lucas's parents were devastated and are determined to leave no stone unturned in an attempt to find a cure for this particularly cruel disease. Initially, they had decided to start a GoFundMe page for Lucas to raise sufficient monies to allow him to experience life to the full, as far as possible.

Lucas and his father, Jamie (image courtesy of Lucas's family)

Whilst undergoing radiotherapy at Nottingham City Hospital, and following an article in a local newspaper that was aware of the Go Fund Me page for Lucas, Lucas's father Jamie was contacted by a company called SonALAsense via the UK based charity Funding Neuro. SonALAsense is an American based company who are currently trialling a non-invasive drug-device combination therapy with Aminolevulinic acid (ALA) sonodynamic therapy (SDT) using tumour targeting and focussed ultrasound.

To date, a small number of post-operative adults have undergone this treatment with positive results and whilst the treatment is still being trialled, it has been offered by the company in conjunction with the Children's National Hospital, Washington DC, USA, to Lucas.

Lucas would be the first child in the world to undergo this groundbreaking procedure which is only available in America.

Currently, Lucas's parents are awaiting a further MRI scan to establish that his tumour has not spread to his spinal cord for the treatment to go ahead - provided that Lucas is fit to travel. Whilst the Washington hospital and SonALAsense have offered to cover the initial costs, Lucas's parents have been told that they will need to deposit a sum of money, yet to be disclosed, to cover any emergency treatment or unforeseen eventualities following the initial procedure.

A further option which is being considered currently, is a palliative care treatment, also under trial in the USA and Germany, involving two drugs ONC201 and ONC206 which again are not available within the UK. Should this second option proceed, in addition to a consultation fee there will also be an ongoing monthly drug cost of up to £4,000.

Lucas's parents have given up work to care for their son and it will be recognised that travel, accommodation, insurance and associated costs could be considerable. As such, donations large and small are being accepted through GoFundMe.

The GoFundMe page can be found online.

Finances raised will not only go towards Lucas's treatment, but will be donated to aid and progress research into this devastating and cruel disease.

Lucas showing just how caring he is (image courtesy of Lucas's family)

So far, the total raised is over £32,500, but the goal is to reach £100,000 to cover not only the cost of care, but to ensure that Lucas can tick some things off of his bucket list and that the family can support future research into brain tumours of this nature.

Any and all money donated will be greatly appreciated.

Lucas's family send their thanks, and we at Nub are sending little Lucas Posey-Bottomley all of our best wishes.