Stressed and tired

I'm so stressed and down at the moment my son has larsens syndrome was diagnosed at 1 month old and it's been appointment after appointment. Hospital stay after hospital stay.  He's delayed in his milestones he cant hold his head up on his own can't sit on his own can't crawl and his a year old.  They also feel he's developmentally only doing stuff a 6 month old is doing.  so have got referal after referal for different people. But there isn't anyone that really understands the condition as there isn't My support groups for larsens syndrome. I'm sick of all of it it's like if he's not admitted were at hospital for appointments and I go back to work this week as Well I dnt know how I'm going to do itbi really don't. 
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