My son has a severe cases of phenylketonuria and has to visit great ormond st in London but we have been informed of a trial treatment in America and are trying to raise the money to help him and to make a dream come true and take him to Disney world whilst there.
Having a very severe form of it means unfortunately he cannot enjoy most normal food or drinks so for him it's about doing the fun things in life so would love to treat him but also try and get him seen by a specialist and see if he is acceptable for the trial drugs.