Our son, Harrison is 13 years old and was diagnosed with HPE at the age of one year. We felt that he could not hear right from day 1 but were devastated when at 4 months it was confirmed. At one year his head began to swell and he was given a lumbar puncture and an MRI and a shunt, which has remained in place for 13 years with no ill-effects.He looked as beautiful and normal as any baby and has no facial deformities.

We went to the Doman clinic in Philadelphia and did the exercises for 4 months, but with 45 volunteers coming every day to our house, it took it toll on us as a family. We stopped. My older son is now 20 and my younger son is now 10. I grieved for 2 years and then it stopped and we got on with life as we could. Harrison's brain has been described to me as one whole brain, which has started to divide, but was interrupted and then started again to leave one ventricle and the inside is filled with water.

He does not have the part of the brain that sees, yet he has been tested and we are told he sees quite well. We don't know how long he will live, but he is happy, loves regular school and laughs all the time, and loves people. Yes, you can survive , but you don't think you can, and some days, you really don't want to , but it passes.

Does anyone have any studies being conducted, with brain cell ( or foetal cell or lab cell ) regrowth. They are doing this with Parkinson's patients and are beginning to look at this for stroke victims. Any possibilities? Harrison does not walk or talk or take care of himself in any way. We do that. Is Harrison the oldest living HPE person? It is a long and rocky road , but maybe I can help you.