On May 2nd, Brody was diagnosed with a brain tumor, and five days later, he underwent a biopsy that went disastrously wrong. The procedure left him in a coma in ICU, fighting for his life with an external drain placed to drain fluid buildup on his brain. After two weeks, Brody began to emerge from the coma, and it quickly became clear that he had sustained significant brain damage. The doctors informed us that a full recovery was unlikely. Not only was Brody battling an inoperable brain tumor, but he was also facing profound brain damage.

Brody was fully conscious of his surroundings but could only move his eyes up and down. He was unable to move his body or speak, and the doctors said he had a condition called Locked-in Syndrome. At that time, the Doctors debated whether continuing treatment for his tumor would benefit him, given the extent of his brain damage. For us, there was no question. We saw all the signs that Brody was still fighting, and we believed he would come back to us. We had taught Brody to communicate by moving his eyes—up for yes and down for no.

Brody spent 26 days in ICU, during this time his external drain was removed, and an internal shunt was placed to manage the fluid in his brain. He began breathing on his own and stabilised enough to be transferred to the neuro ward.

Radiotherapy was scheduled to begin in the second week of June. However, Brody developed a infection at the site of the surgery on the back of his head, which delayed the start of his treatment. A plastic surgeon had to debride and re-suture the wound.

Despite all the setbacks, Brody’s natural recovery has been incredible. He progressed from small movements in his fingers to moving his arms, legs, head, and neck. We knew then that Brody could move his entire body, but extensive rehabilitation would be necessary.

Radiotherapy was finally rescheduled. Brody completed his this on the morning of July 12th, but that evening, he started vomiting, which we initially thought was a side effect of the radiation. The vomiting worsened over the next week, and tests results of his brain fluid confirmed a shunt infection. This led to his fifth surgery in less than three months, to remove the infected shunt.

Throughout these weeks, we had been in contact with doctors in Europe, trying to obtain medication to treat Brody’s tumor. Finally, we secured the medication from Germany, and Brody began the treatment on July 31st.

Overall, Brody is coping really well, despite the enormous battles his little body has endured. His whole life and body have changed so much. He truly has the heart of a lion, and his determination to recover is nothing short of inspiring. As long as Brody is fighting to get better and live, We will be right there, fighting alongside him. We will never give up on Brody, just as we didn’t give up on him in ICU when the odds seemed impossible, and everyone gave us the worst possible prognosis for his survival and recovery.

Brody's tumor is driven by multiple gene mutations, each driving the growth of the cancer. The medication from Germany targets just one of these mutations. We are planning to send a sample of Brody's tumor and blood to a testing clinic in Germany for further testing to identify any additional mutations. These tests costs run into the thousands and, once again, the Irish healthcare system does not provide financial support for these tests.

Brody had a 3 month post radiotherapy MRI in September, which confirmed that the tumor had reduced in size. Brody's medication from Germany is one that he will need to take for as long as the tumor remains stable, reduces, or—hopefully—is cured. This is not a short-term treatment but an ongoing necessity that costs thousands of euros each month. Unfortunately, the Irish healthcare system does not cover any of these expenses.

There is a Car T cell trial open in Rome for children with brain tumors, Brodys medical files have been sent and we are awaiting details on this and when the phase for Brodys particular tumor will open, latest information is December. We are strongly considering bringing Brody to Rome. These decisions will be made based on Brody's clinical health and cost! These trials can run in the hundreds of thousands and once again the Irish healthcare system does not provide any assistance.

It's scandalous what Irish parents have to do when faced with the worst possible prognosis for their child.

Brody had started a rehab programme in Temple st but it wasn’t sufficient for the extent of brain damage he had and we knew he needed access to a full time programme. This could only be done in the National rehab hospital. Although the waiting lists are extremely long, We appealed to them through doctors and personally ourselves. Brody received a place and was discharged from temple st and began his programme in National rehab hospital on 9th Sept.

Brody's face is paralysed on one side of his face, he doesn't have the ability to blink and his eye has limited movement. While he still cannot walk, he has gained enough strength to use a self-propelled wheelchair. He is now able to talk, though not in the same way as before the biopsy, but that doesn’t matter, he has a voice back. He is back eating most foods but is still on thickened fluid due to the brain damge, but this is still improving. Brody has loss of movement and significant sensation on his left side of his little body, but since august his strength on his left side is catching up with his right and the sensation is significantly improved. Brody’s rehabilitation programme is expected to last about 12 weeks at the National Rehabilitation Hospital, where we hope he can continue to make progress.

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