Some Days Are Just Harder Then Others

I dont get on a soap box often, but I have to say that SMA really sucks.... yesterday we lost Kalair and I also found out that there was another child who lost there fight as well. I think in the past 6 weeks I know of at least 7 little ones from age 2 to 7 that have lost there lives. Thats way to many babies taken way to early. SMA makes me so mad, everything is a struggle, and what really makes it hard is that there isnt anything set in stone when it comes to the care of our children. One person says do this and another says to do this. Well I do know kalair would still be alive if there wasnt a major error made at the hospital in regards to her diet, but Im sure the medical people there will find away to get around it. Its just so frustrating to me, SMA kids have a hard enough time staying alive, and an even harder time just being healthy. I just wish someone would educate the medical professionals about this disease, and if they dont know then please Lord make them at least listen to the parents who care for these kids 24/7. Ok Im done..