Help Tia enjoy her life with EB x

My daughter has nhjeb ( non herltiz junction eb ) this mean she is very fragile and her skin blisters and falls of at the slightest touch, and she is on many different painkiller To help her stay comfortable. the sun and heat can cause her skin to blister, tia has to be bandaged all over to cover any raw skin, tia is 2 and a half she is unable to walk due to pain and having no skin on her feet.
it is very hard to deal with and I try reall hard to make her life as normal as possible, tia loves being outside but unfortunately this cannot always happen, tia spent 6 and a half months in Great ormaned street hospital when she was first born, the doctors told me that they dont know how long tia can live for as they dont know what tia future is..Tia is always in and out of hospital with many different infection.I would like to try and raise money for tia so I can make as many memories as I can with her and try to make her life as happy and as normal as I can.. many thanks.
https://www.facebook.com/pages/Tia-battles-with-EB/1563949643845024