Hi, I'm a newbie here with my first post, I have a 1year and 20month old baby girl born with BWS and HI (Congenital Hyperinsulinism). At the moment she has the usual BWS large belly and left side hemi, with 2cm foot longer than other. She had her first tongue reduction 6months ago undertaken at GOSH which need x3 attempts as the stitches would hold in and her tounge would'nt heal due to her Octreotide and Sirolimus (HI) medication which makes her immune system very weak like chemotheraphy for cancer patients. Shes is always managed by GOSH in London so is there any BWS here from London?
Any BWS managed to claim disability living allowance successfully?