The Story of Alfie.

I am writing this on behalf of my little friend, Alfie Burke, who is 8 years old.

In 2018, Alfie, then 4 years old, was diagnosed with an Optic Pathway Glioma, which is a tumour that can occur in patients diagnosed with Neurofibromatosis. This news came as a huge shock to the family and everyone that knew them.

In 2019, Alfie started his first chemotherapy, through having a line inserted into his chest and he appeared to respond well. He battled his way through all of his treatment like the true warrior that he is. In December 2020, he completed the chemotherapy. Alfie and his family got news that the tumour had gone.

On 4th April 2022, after having undergone several MRI brain-monitoring scans, Alfie's Optic Pathway Glioma, was sadly, shown to have returned. For Alfie, another battle was beginning.

On 22nd April 2022, after much discussion with the family, Alfie's specialist decided to start him on his second line of chemotherapy. Alfie underwent another MRI brain scan on 15th July 2022. On the 25th of July 2022, the hospital's Neuro-Oncology MDT and Alfie's specialist had a meeting, during which, Alfie's parents Jay and Tash received the devastating news that, not only did the scan show that there was no change in the original Glioma, but that a secondary tumour had been discovered, growing on the brain stem; this was determined as potentially, life -threatening.

To add to the horrific truth that their son was, is and will be facing, yet another battle, Jay and Tash have the added burden of finding the money to fund his necessary treatment in the future. Alfie will have to start his third line chemotherapy, which is called Avastin-Irinotecan. Jay and Tash have been informed by the specialists involved, that, should this third line chemo for Alfie's brain stem tumour fail, (which is highly probable) that there is only one medication:- ALEXION(Trametinib) that could then be considered. This medication is extremely difficult to obtain and would potentially need to be funded by the family. The estimated cost of this is £1,120 per pack for 1 weeks supply. Patients have to be given a tablet daily, for 12 months. The total cost of medication alone is £58,240

This is some of the most devastating news that a child and his family can face.

Support is needed, URGENTLY, whether it be fundraising, donations, or any thing that you can afford, to make any treatment options available to them, more accessible and less stressful. Any additional money raised could go towards allowing Alfie and his family to take some much needed time out. Facing all this is bad enough but the stresses with which it comes, affect everyone concerned, especially with the added financial strain.

This is one of the most deserving families I have ever met. Alfie has such a brave, fighting spirit. His parents cling to their hopes and dreams for him.

I know times are tough for everyone right now, but your support would be really appreciated, in whatever way you can help. Every little bit of support will be a step closer to a positive outcome for Alfie and his family.

Please help.

Thank you all, from the bottom of my heart and on behalf of the Burke family.