The boy who wants his leg cut off

[Pud2]

Did anyone see this? I just found it on iPlayer and I've spent the last hour on an emotional roller coaster watching this remarkable young man and his wonderful parents. A brilliant, and very humbling programme.

I havent watched it yet, but i intend to. My DS has the same condition.

My DS does too. I haven't seen it though, DS is seven and things are ok at the moment so I don't want to scare myself.

My DS is 5, he had 3 genetic tests last year, all inconclusive, before they diagnosed him at christmas because hes developed neurofibromas in his neck. Hes absolutely fine at the minute, nothing to be concerned about with regards to his NF1.

We call them his lumps and bumps! He's also dyspraxic which is quite common in people who have NF1.

Yes, i watched it.

Gorgeous boy. I hope he's happy now. He went through so much so young.

DSs lumps arent really noticable, they are in his neck rather than on it, iyswim. He has lots of CAL patches though, they are "special spots" here we dont seem to have any dyspraxia here, and his behavious and learning are fine, which i was told is a common issue. Hes quite small and skinny, but not so dramatic that he looks massively out of place amongst his peers.
When did your DS start getting the lumps? How many does he have now, and do they bother him / draw attention? Ive never really had the chance to speak to anyone else who has experience of NF1.

I don't know whether watch it DD and DH both have NF.

I think you may find it pretty emotional to watch. I didn't realise how common the condition was.

Gin - my DS was diagnosed at 5 too. He had quite a lot of CAL spots at birth and the HV mentioned it. I kept an eye on them and noticed the armpit freckles and a few lumps on his torso. The geneticist confirmed that it was NF1. I didn't bother telling school till last year (P3) but he was having a few issues so I told them. He sees OT and has physio assessment this week.