Living with Spinal Muscular Atrophy - Why?

Lizzy lost 3 teeth in two days!! Two last night and one today. One more to go and we will have all the loose ones gone!!
It has turned colder here again.  Not even ready for it. Then, Thanksgiving not too far away and CHRISTMAS. Oh my where has the time gone?

I was on the phone the other day with the Mom that lost the little baby Grant a on Lizzy's birthday. How is it I feel her pain? How is it I feel connected to her?  Its tears my heart apart just thinking about what happened to this baby. To know we were so close yet so far away. I could of helped them so much. if I had known. I do not understand why this happened to them.

I never understand the why with SMA. Why is it that with this disease doctors in our area and many area across the globe do not want to deal with it?  Why are some doctors still refusing to treat SMA and giving parents the same diagnosis as we were given for Lizzy? Why are so many trying to stop the research in gene therapy? Is it the drug companies wanting more money? Is it that they do not want treatment? We all NEED to start paying close attention what is going on in The SMA World. What is so hard about getting these kids  the treatment they need to help their quality of living? I do not know if SMA will ever be cured but if US will not allow kids to get treatment here we will find some way to go out of the country to get it. 

Makes no sense to me why we having these doctors are not wanting to help these kids. Some SMA organizations are fighting against the gene therapy. Why, after we have come so far? These people need to look into their own cold black hearts and ask themselves why they would not want to help an infant or a child. Why are they being so cruel? Why is it so political? 

God help these people causing so much controversy over the most promising treatment.
Look in to a child eyes with SMA and tell them you do not want to help them. Tell them you do not want a cure.

I do not think we will be going to the FSMA conference this year. We just can not afford the cost to get there and all the registration fees. Sounds like it will be a grand affair. We have to look at the big picture. Our small van with all Lizzy's stuff is just not big enough to drive that far anymore. She has grown do much and her Dad and Grandfather also want to go this year.We got one adult registration fee waved but then you have 3 other adults and Lizzy we have to pay out of pocket for. Then the motel room. As much as we want so much to attend for Lizzy's sake I do not think we will be able to swing it based on our current income. We shall see. Lizzy's heart will be broken if we do not go but maybe we can do a compromise. There is always CCK  in the Spring or maybe just a families get together somewhere.

We just heard one of Lizzy closest friends Drew was in the hospital recently. Prayers to you Drew!! He is home now but still not feeling himself. Prayers to Larkin Bish as she is not doing well and in the hospital. I talked to Nana Barb and Gina Bish yesterday. Please add theses kids to your prayers. The power of prayer is so strong. You can feel the chain around the world filled prayers for these beautiful kids.

Another child with SMA earned her wings in Peoria. How more babies /kids will die before these doctors will listen to us?
R.I.P. Rebeckah Marie Courdt (March 5, 2007 – November 14, 2010

Fly high little princess!!  fly free of SMA!!
Prayers to the family of Rebeckah to be able to get though the days ahead.
Breaks my heart.


" We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth