Hi, my name is marzi84!

marzi84

Hi, l have a daughter with congenital myasthenic syndrome she is 10 months old, l hoping to get to know some others carers with children with similar conditions and raise awareness. No body knew what was wrong with her when she was born we got out diagnosis whilst she was in intensive care at 4 months old. 

Ross_Alumni

Hello @marzi84

Welcome to the community, I hope you are well.

Thanks for telling us about your daughter. Is she receiving all the support she might need?

Raising awareness is always a good thing to do, and I hope you find others with similar situations.

chiarieds

Hi @marzi84 - & welcome to the community. How is your daughter getting on? This must have been a difficult time for you with her in intensive care for so long, Does she have any difficulty with feeding? I hope you're having a good weekend, & I look forward to hearing from you again.