I keep hearing over and over about the father from Texas that wrote the blog/bucket list for his baby girl that was diagnosed with SMA Type 1. I tried to keep quiet and I just can not. I sent him a message but I got no response.
The questions that keep bothering and having me wondering where is all the info they got coming from? I felt sorry for them. but...... as parents do YOUR HOME WORK!! Granted SMA Type 1 is a terrible disease but there is on going research and research drugs available. These kids can have a good life if the parents are proactive in their care.There are doctors like Schroth and Bach that specialize in helping these kids live. If the parents choose palliative care over letting their child live that is their choice, but people let it go!! Not a choice I would make ....but, I have heard it every where about these people! They were VERY misinformed. Babies are not born with expiration dates.
Lizzy was similar to their baby strength wise and their baby girl might be a bit stronger because they said "she losing strength at few months old!' Lizzy lost her head control shortly after birth and was very floppy. I saw the news report video. She is a little beauty.
Its up to the parents to make that decision to work to save their baby or just let them die.
The controversy over palliative care and being proactive in the care is why people are so upset.
I do want to add that there is a many booklets on care of children for SMA at the FSMA web-site
http://www.fsma.org/FSMACommunity/Publications/ You can download them on your computer and then print out the info.
http://jcn.sagepub.com/cgi/content/abstract/22/8/1027 International Care Of SMA
We try to do as many things as we can with Lizzy but we are also careful. We sanitize everything, not let her around sick people, she wears a mask while going in/out the hospital for PT/OT and speech and no one can touch her. Plus, every one needs to sanitize their hands and no one in her face. We just use common sense.
We chose to love life and live each day and do everything we can do make Lizzy's life as happy and healthy as possible. She says exact quote " I love my life!"
I can not make a bucket list for Lizzy. She has to do that herself when she is older. Lizzy is 8 yrs old with SMA TYPE 1 also.
www.our-sma-angels.com/elizabeth
"We believe in miracles because we live with one!"
MY BUCKET LIST
To give Lizzy the healthiest and happiest life possible
To help as many parents as I can with the proper info about care of kids with SMA
To see a treatment to cure SMA in my life time
To live each day and enjoy life
To make sure my family is happy
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