good times

on the 6th of march i am pleased to say due to the weather being very cold and horrible Bethany is having a good day today unlike yesterday when she burnt within two minutes of being exposed to the uv rays from the sun. its such a horrible thing watching your child burn in front of your face. so glad we have bad weather again :D. Bethany's new itchy spot is her scalp she has blood and scabs on her head but at least the rest of her is clear :D. We have heard from great ormand street and have her appointment on the 20th of march :D