Lucas Posey-Bottomley is a local child who was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) at the age of 10.

The family and wider community have been taking part in a great deal of fundraising efforts to either find Lucas a miracle, or to pay for his palliative care and to ensure that he and his family can spend some quality time together.

Lucas's family have been keeping the local community informed of his progress, and have since shared another release about Lucas's condition:

Following his diagnosis of Diffuse Intrinsic Pontine Glioma (DIPG) a very rare and highly aggressive brain tumour, in April of this year, the parents of 10-year-old Lucas Posey-Bottomley of Rutland, are continuing in their efforts to raise much-needed funding towards the care of their terminally ill son.

In consequence of the withdrawal by SonALAsense and the Washington Children's Hospital of their offer to trial a revolutionary new treatment for Lucas, due to his no longer fitting within their testing protocol, all efforts are now directed towards palliative drug treatments obtainable via consultants and pharmacies within Germany.

Having successfully completed consultations with the German doctor trialling the anti-cancer drugs ONC201 and ONC206, Lucas commenced his trial of ONC201 during the last week of June at a cost of €1,896.55 for one month's supply. Lucas will have to remain on ONC201 until he goes into remission or his UK doctors believe his cancer has disappeared. Each month's supply consists of eight tablets with two tablets being taken together once each week.

Provided after a three-month assessment it can be seen that Lucas's condition is improving, a second tablet ONC206, at a cost of approximately €330 per tablet, will then be prescribed together with the original ONC201. Neither of these drugs are available on the NHS nor via private prescription within the United Kingdom. Prior to receipt of the first batch of ONC201, Lucas's parents were obliged to pay £530.66 in customs/import duties.

A further shipment of ONC201 to the value of €3,660 has been ordered and it has been presumed will continue to attract similar import duties prior to delivery. Representation has been made to Lucas's Member of Parliament to see if these taxes can be waived in this case.

In late June Lucas's condition deteriorated and he was admitted to the Leicester Royal Infirmary with breathing difficulties where the doctors discussed implementing end-of-life care. Miraculously young Lucas fought back and he is now at home and his condition is stable.

Lucas will undergo an MRI scan on Thursday 21st July as requested by his doctors in Leicester and Nottingham to establish the results of his radiotherapy treatment at Nottingham following his initial diagnosis, but it is anticipated that this time frame will be too early to show whether or not there has been any improvement to date following the commencement of his treatment with ONC201. It is envisaged his parents will be required to pay privately for a further scan in approximately two months' time.

Lucas was recently put on nutritional supplements, unavailable within the UK, by his parents, which were purchased from America and were also forced to pay £230 import duty on these. With recent assistance from nutritionists within the NHS, Lucas's parents are now able to prepare similar supplements thereby saving money.

Fundraising efforts continue across the board and the family wishes to express their heartfelt thanks to all those who have donated and continue to spread the word. Obviously, with the cost of ongoing medication and associated fees, it is important that fundraising efforts continue.

Lucas is currently wheelchair-bound and through Social Services his parents have been provided with a special vehicle which will allow them to take him for regular visits to the Rainbow's Children's Hospice in Loughborough where he can enjoy their many facilities.

For the moment the emphasis is on the provision of palliative care drugs, which in previous trials have shown improvements in longevity and quality of life.

Donations are still being accepted on Lucas's GoFundMe page.