Genistein Clinical Trial A parents’ perspective

About Oliver  Ollie is an extremely active Sanfilippo child!  He can be challenging when asked to do something he does not want to do

Hope for our Family  We first heard about Genistein at the 2006 MPS Conference  This was our only hope!  We now had something to fund raise for!

Ollie is on the Genistein Clinical Trial Oliver on the rooftop Play area Manchester Children’s Hospital

Visit 1 – 2 weeks before commencing trial  Height & weight  Blood pressure and sample  Urine sample  Concomitant medication and adverse events  Actiwatch, sleep diary & consent forms

Day 1 of 4 day visit  Shown Ollie’s room and around the ward  Emma sorted out TV, DVD’s and toys  Ollie was weighed and measured  Oliver’s blood pressure and blood sample taken

Amazing Staff, Fantastic Facilities.  All the staff are very experienced with MPS Children.  They made us feel, comfortable, confident and relaxed about the whole procedure.

Day 2  Tests with the clinical psychologist  Met the anaesthetist  Lumbar puncture

Day 3 and Day 4  First dose of drug  Bloods taken at 1 2, 4, 8 and 10 hours after his first dose of drug

Day 5  Home at last  10 months on we are seeing general improvements with Oliver