What syndrome could this be?

[tigwig]

A new friend my daughter has made has learning difficulties and something else wrong (I'm not sure if the 2 are linked) with her. I was chatting with her mum but she said the name of the condition quite fast and I didnt catch it. As I dont know her very well I didnt like to keep on asking her to repeat it but it sounded like SPS or when I've googled it MDS sounds more likely? The child in question is 8 and was diagnosed at 12 months. She has problems digesting food, has to have regular check ups to make sure her blood is functioning correctly. She may need a bone marrow transplant in the future and to look at her you wouldnt know. I am sure she said she will only have the life expectancy up to 9yrs and the condition is genetic and only 60 people have it in the UK. Any ideas?

[Sqad]

Shwachman-Diamond syndrome.

[tigwig]

You are right again Sqad! Thanks, I've just googled it and indeed she has all the symptoms her mum told me poor love. I forgot to mention that she is a lot shorter than other children of the same age too. It seems that it is more serious than I first thought.