A better life for Tessa-mai

Our daughter who will be 3 in may was born with a rare genetic disease called glycogen storage disease type 1b, she is at a very high risk of hypoglycaemia and comas so she has to be fed every 90 minutes and machine fed 13 hours a day to keep her sugar levels at a safe level. Sudden death is not uncommon due to liver failure . She has poor immunity so she needs injections of gcsf 3 times a week. She has inflamed intestines with risk of Crohn's disease. She has been in and out hospital since birth. We would like to make as many memories as possible so there will be some positive memories to look back on in the future instead of just this horrible disease. So far type 1b has no cure, but fingers crossed this will change.