We currently have daily 16 hour coverage, but seeking respite care coverage. Horizon NJ would approve for facility admission but not extra nursing hours. A facility is not an option for us since we have a SMA 1 kid and she's fragile. I explained that and they wouldn't budge saying what if the nurse cancelled and there was no coverage. We wouldn't trust our daughter with anyone that is not trained by us and familiar with her care. I'm pretty sure my daughter wouldn't be happy surrounded by…See More
"Hi Lisa.... I would be really happy for my book to be included! Let me know the webpage when you've got it up and running and if your on Facebook, please add me. I thought smaspace was no more so I never come on here and check my messages x"
The list was getting too long -- b/c there are SO MANY GREAT ORGANIZATIONS raising awareness and funding to cure SMA. Please visit this link to see the latest list of resources available to the SMA community.