Childhood Tumour Trust support children and young adults (and their families) who have Neurofibromatosis Type 1 (NF1). They arrange annual camps, meet ups, online baking, signing and craft sessions, education sessions and support for the whole family. There’s much more and too much to mention here.

Sam absolutely loved his first NF camp last summer. He made loads of new friends and had a ball. These things don’t come cheap, so when the opportunity to do some fundraising (by way of a sky dive 😳 which has always been on my bucket list), Uncle Tickle and I couldn’t resist.

A little bit of a back story on Sam. He was born a ‘normal’ and healthy baby, or so we thought. Fast forward 5 years to the school’s height, weight and eye check that used to happen and in a whirlwind of eye appointments ending up with an emergency brain scan and finally a diagnosis of neurofibromatosis type 1 (a genetic condition). But that was just the beginning. He had an optic pathway glioma that was pressing in his optic nerve. And it was growing. Interfering with his eye sight. Chemotherapy was started and after a stressful 10 weeks watching his sight disappear day by day, his vision stabilised, but he was left severely sight impaired. 18 months of gruelling chemotherapy later the tumour was under control. Chemo stopped and we had a lovely 15 months chemo free, until the tumour started growing again. Another 18 months of chemotherapy started. This time the tumour has stabilised and 3 years on it still is 🥰 But Samson is still severely visually impaired and always will be. He has to use a white cane while out and about and has to have all written documentation modified at school. He finds team sports tricky but loves to play on his PS5. He’s a trouper and rarely complained throughout his 3 years of chemo, even though it was clearly a hell of an ordeal for a child to go through.

We’ve put a target of £1000, but would be great if we could double this. The more money we raise, the more great work CTT can continue to do. It costs over £500 per child to attend camp, but this is only a tiny bit of what the charity does.

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