I have decided to write this blog as a diary about my daughter Francesca (Frankie) and her journey through life with the condition neurofibromatosis type 1 (NF1). I have this condition myself and when having children there is a 50% chance of passing it on to your children. I have been quite mildly affected by NF1 and it seems as though the condition is going to affect her more. The main problem for Frankie so far is that NF1 has caused her to develop scoliosis (curvature of the spine) which will probably need major surgery to correct at some point in her childhood. Apparently correcting scoliosis in NF patients is not as simple as correcting scoliosis without NF involved so that's a bridge we'll cross when the time comes.

Frankie has just been in hospital having had a  partially collapsed lung, the jury is out as to whether the scoliosis caused this. The respiratory doctors think it possibly has and the orthopaedic doctors think more likely not. My own take is that if it happens again then possibly the scoliosis is to blame. Fingers crossed it doesn't!