I was planning to do a video today to thank everyone for sharing Oakley’s petition and invite you to share far and wide so we can get SMA on the newborn screening test.
Instead, we are back in hospital again. For the 4th time this week.
Today is a reminder that if Oakley was diagnosed at birth, before symptoms were showing, then today and this week (and her whole life) would be completely different.
We would not have to be up all night with nasogastric tube blockages, because she would still have the strength to breastfeed. She would not have a ventilator to help her breathe while she sleeps because her breathing muscles would still be functional. Our families physical and mental health would not have been tested on so many levels. And the list goes on.
Please sign and share this petition so other families don’t have to go through this heartache 💛 Kate