QUICK SURGERY UPDATE: Sam is going to be nil by mouth from 2am (that means GJ feeds off) ready for possible circumcision tomorrow (Friday). This is the third scheduled attempt, 2 previously cancelled due to his deterioration. We hope and pray this goes ahead without any hitches.
If you live in NZ and love our little Sammy.... here is something very cool and easy to help him, and the many thousands of other kids with rare conditions. On 28 February it is
NEW ZEALAND RARE DISEASE DAY
This is a chance for awareness to be raised for the many kids and their families living with a rare disease. The rare disease patient is the orphan of the health system, often without diagnosis, without treatment, without research and sometimes with little hope, and has difficulty accessing appropriate health and disability services.
The Kids Foundation is the paediatric wing of IDFNZ and has been so wonderful at supporting us. When I'm in hospital I look forward to Thursdays as I know Sandy will pop in with her warm smile and years of experience in the health sector. They give vouchers for food and petrol, run seminars and workshops, advocate on our behalf and so very much more. If you have a mo' click on the link listed below and see if you can't get your workplace or school having a Jeans for Genes Day and the proceeds going to the charity of Sam's choice.
You can download flyers, read more to help you on your way and read a little of the amazing work this charity does.