Lenny's Story

He was first diagnosed in October 2022 at 5 years old through a regular eye test at school, we were referred to an optician for a second opinion who knew right then somthing wasn’t right.

Lenny then had a CT scan to find there was a lump in the right side of his head the size of an adults fist, the next day he had his first brain surgery and they managed to remove 90% of the tumours, 2 weeks later we got the heartbreaking diagnosis the tumour was a grade 4 glioblastoma.

They were keen to start treatment straight away but Lenny had a build up of fluid around his brain which led him to to having a shunt fitted.

January 2023 Lenny began his 6 weeks of photon beam therapy along side chemotherapy which he handled like a champ , in fact he used to beg us to go back to the Christie’s he loved the place that much.

We were getting stable scans for the next 6 months until they noticed on there was growth, the tumour was back !! at that point his consultant told us there wasn’t any other treatment options available for Lenny. The Following day his consultant called us back and advised us there was a trial drug in America that Lenny qualified for , he would be the first child to try this type of immunotherapy for this diagnosis.

We began the trial drug in hope this could be are saviour, it was for a while, his next scan showed the tumour was shrinking but little did we know the side affects this drug caused on Lennys little body, brittle bones being one of them.
Lenny broke his femur and got multiple fractures in his knees and ankles which led to him having to stop the trial drug for 6 weeks.

The following scan showed the tumour was growing again, his surgeon felt confident the lump was accessible so Lenny went down for his second brain surgery.

We began the drug again only for his next to scan to show us it was back and there was nothing more we could do for him.

In January 2025 we were told to take Lenny home and make the most of the time we had left with him.

On the 5th of April 2025 Lenny passed away peacefully at Francis house children’s hospital surrounded by all his family.

Lenny was a bubbly character who adored holidays, sunsets and anything spiderman related. He never let anything dull his mood, he took everything in his stride. He was brave, funny, kind and continued to make us proud until very his last breath.

Thank you so much for the Ben Saunders foundation for allowing us to stay in there holiday home while we navigate through the first birthday without him here with us to celebrate.