Texas FSMA
January 22, 2006 by · 2 Comments
Just wanted to let you all know that we had our 1st meeting yesterday for the Texas FSMA chapter at our house. It was great. We had 25 people show up, representing 9 SMA families. We had a SMA mom from Houston that drove up for the meeting. The ironic thing is that all the families represented yesterday were girls and Savanna was one of the oldest.
A few updates that I thought you all would like to know. FSMA is going before Congress again to try and make SMA one of the newborn screening tests. What they have found is that if you can get a baby on the drug trial BEFORE they being to show symptoms of SMA, it may have a profound effect. One of the families that came yesterday lives in Comanche, Tx. They lost a 10 month old boy to SMA. They then decided to do PGD, which is basically a type of in-vitro procedure that assures you that the baby will not have SMA. Well, they have 5 month old twin girls and one of the girls has SMA. The twins are obviously fraternal; if they were identical they would both have SMA. Not only does she have SMA, she has Type 1. Since she tested positive for SMA at birth, they immediately enrolled her in the drug trial in Utah and to date she has not shown any noticeable symptoms of SMA. That is amazing. A normal Type 1 baby would not be able to do the things that she has done.
One of our goals as a Texas chapter is to get info to the neurologists in state so that when a child is newly diagnosed, they will be given info on the Families of SMA with local contact information. It is so important to be able to talk to other parents. I know that was critical for me and Tim. There are 203 SMA families in Texas that are registered with FSMA. That’s a LOT of families, and those are just the ones we know about. It’s kind of sad that only 9 families have responded to coming to the meeting, but I know there were several that just could not make the meeting.
It was refreshing to see all the faces yesterday. Some familiar, Lanie Hannah, Grace Coggin, Hannah Ostermyer. But some new ones. Two families that recently moved here from Michigan. And of the 7 children that were here yesterday, Lanie & Hannah were the only ones without a feeding tube. It was so nice to feel “normal”. I’m attaching a few pics. The children were all wonderful. Very happy, sweet, content children. I told Tim I would take a houseful of SMA children coming over to visit versus a houseful of “healthy” children any day. Savanna was thrilled to see Lanie; I think they will become best friends someday as Lanie just loves Savanna. She told her Mom that she can spend the night sometime and sleep in the spare bedroom. They had a great time playing together.
I will try and schedule a meeting for us in Feb. Just need a little breather first. Also, some of you might not know that I started back to school last week. I have felt the last several months that God was “calling me” to go back to school to get my nursing degree. It is a God thing because I never had a desire to be a nurse before. Most of you don’t know, but Tim and I both have a dream of having a special needs camp someday. We want to have a place that special needs children can come to once a month for a weekend and just get to be around other handicapped children. MDA camp is only 1 time a year and the kids look forward to it all year long. Not only that, for some parents, that is only 1 time a year they get a break. Well, I felt that getting my nursing degree would also help us later down the road with our “special needs camp dream”. So, I am taking Chemistry this semester since I cannot apply for the nursing program until I have completed that and Anatomy & Physiology. The thing that stinks is I already took Anatomy & Physiology and Microbiology (another prerequisite) years ago but I have to retake them because the nursing program requires you to have your sciences in the last 5 years.
So, life will be very busy from now until May. But I figure, it’s only 16 weeks. It’s not that long. I have been praying about this for months and felt this is where God is leading me. I plan on keeping my Curves business for at least 5-6 more years and will probably sell after that time. I know that sometime in the future I will write a book, but as someone said last week, my story is not finished yet. We need to start getting the word out about our date for the fundraiser, Aug 12. I think I will try and have some little business cards printed with a “save the date” thing on there so each of you can pass them out as you are out and about.
I’ll be in touch soon regarding scheduling a meeting. If you know anyone that would like to join the committee or can help in some way, please feel free to bring them on. Eric Ostermyer (SMA dad) said he has a few contacts for getting a caterer, so I am hoping something will pull thru. We need to pray in a caterer that will donate all the food.
As always, thanks for all your help.
Mindy