bad night and in wet wraps

(14/4/2013) hello everyone Bethany has been a bad state tonight. She has torn herself to shreds,is very itchy and is in pain. She is in wet wraps and it was a major argument to cream her and get the bandages on her but i managed it. my poor baby. wish there was something i could do to give her comfort. thats down to great ormand street lets hope they get back to me asap.  lots of love too you all

its been very challenging

(13/4/2013) Bethany has been very up and down recently her skin is so dry even with all the creams and medication that its just falling off. She has tore her head open and has scars and scabs all over her head. Bethany is currently going through a stage where she does not like to be creamed or medicated and it has made things very challenging. Still not heard from great ormond street I will be calling them on Monday . I am currently appealing against the dla decision of giving Bethany low rate care allowance.

ups and downs and bad reactions

(9/4/2013) The last couple of days bethany has had her ups and downs she has cuts all up her feet and has had some bad reactions too her skin.unfortunatly I don't have a camera at the moment as my phone is in for repair. still waiting to hear when bethany is going to be admitted to great ormand street hospital hope everyone is well x

bethany with mummy

(6/4/2013) Bethany with mummy before her family outing looking gorgeous as always. Just hope the weather cools down for Bethany's skin 

burnt badly while playing with her friend

(4/4/2013)

Bethany was having so much friend playing with her friend at a play centre but burnt so badly :( so sad

my princess had a reaction to the cream

(29th match 2013) My princess has had no flare ups today has still been itchy this afternoon but now shes bad again. I was creaming her with her normal cream like i do and she starts screaming in pain telling me its burning her skin. I look at her feet and they have gone from being dry to very angry red and sore washed the cream straight off. So confused

not a happy mummy

(28th march 2013) is not one happy mummy i am having to try my best to fund raise to get bethany body suits to give her comfort in her day to day life which the nhs will not pay for but a girl in the united kingdom has just got a 5 grand boob job on the nhs!! Where are nhs priorities gone its not fair and its discusting. people like bethany are ill and need the money but they are just throwing it away willy nilly and not helping the people thay truely need it!!