I’m Kerry, my husband is Chris, we have a boy called Callum aged 13 and a boy aged 9 on 28th October, we have a girl called Hannah who is 4. She has PDH. She was diagnosed at the age of 3 on the 22nd of December 2016
Hannah’s diagnosis was a long road of tests. We found out through the ddd study that Hannah’s is a new mutation, so none of us have it - Hannah is very special.
Hannah is on the ketogenic diet, she started it in April and already seen improvements. She is orally fed mashed, very verbal in her own little way, she’s just started to sit and roll she doesn’t really use her hands only to lick herself.
She has epilepsy, very delayed in all areas, has cortical visual impairment and a long list of other problems ,we hope one day she will walk.