My son is turning three this year and was born with hypertrophic obstructive cardiomyopathy and Noonan syndrome. It is a difficult journey for me especially since most nurses here are not familiar with the disease. It seems like there is no hope for me and my son because there don't seem to be anything the doctors can do for my son except to him beta blockers and diuretics.

He nearly suffered heart failure and had to be on ventilation for 4 days. I'm joining this support group to find help out there from doctors and families and developed countries as to what can be done for my son. I'm going to lose my only son, I'm really scared and I feel better now that I'm joining up in this program.