Jenna is doing well. She is feeling much better than a few weeks ago and has been back at school. She is now attending Mon-Fri and is lovin' it! She was actually upset on Saturday that there was no school. Boy is she going to be dissappointed once summer comes!
We are slowly increasing her Albuterol and so far, so good. We have to do is slowly because it elevates her heart rate. It is amazing what she has gained since starting it. Her speech has taken off and she is talking up a storm. And her voice sounds SO much stronger. She seems to have gained noticeable strength in her biceps too. And I do have to say it has been REALLY nice to see 100% o2 on her pulse ox the last few days! : )
Welcome to JJ's Journey!
A day in the life of Jenna! Jenna has Spinal Muscular Atrophy (SMA) Type 1. SMA is severe neuromuscluar disorder that effects the muscles that help her move, eat, and breathe. Currently there is no treatment or cure. For more information on SMA, please visit www.fsma.org or visit www.our-sma-angels.com/jenna!
Wednesday, June 9, 2010
Saturday, June 5, 2010
It's that time of year again! We are planning and preparing for the 7th Annual SMArt Walk for a Cure. Please feel free to join us!
SMArt Walk for A Cure
Saturday, August 7, 2010
Beaver Island State Park
Area 4 A & B
Grand Island, NY
Please feel free to download a brochure: SMArt Walk Registration Form
Unable to attend the walk but want to donate? Please feel free to do so here: WNY FSMA Fundraising
TOGETHER WE CAN FIND A CURE!
What is Spinal Muscular Atrophy?
- Spinal Muscular Atrophy (SMA) is a motor neuron disease
- The motor neurons affect the muscles that are used for activities such as crawling, head and neck control and swallowing
- It’s a relatively common "rare disorder"
- Approximately 1 in 6000 babies are affected and about 1 in 40 people are genetic carriers
- Currently there is no treatment or cure for SMA, the # 1 genetic killer of infants under age two
Families of SMA is dedicated to creating a treatment and cure by:
- Funding and advancing a comprehensive research program
- Supporting SMA families through networking, information and services
- Improving care for all SMA patients
- Educating health professionals and the public about SMA
- Enlisting government support for SMA
- Embracing all touched by SMA in a caring community