I've had my feeding tube/fundo wrap for 10 years now. I'm 15, almost 16. I have sma type 2. I had severe scoliosis when the dr first put the feeding tube in. Since then, I've had multiple back surgeries, including a spinal fusion. My back is a lot straighter. For about a year now, my feeding tube has been leaking from the site. Sometimes it leaks my formula, but most of the time, it leaks pure stomach acid. The acid is literally eating my skin around the stem of the tube. I saw my GI dr about…See More
I visited a very interesting startup few days ago - called voiceitt. they have a few interesting patents which allow translating a very un comprehensible speech. We saw a few demos and when we left there I thought that this is a must for…"
At any difficult time of my life I've always flipped open my bible to a random page for guidance. There was a time when I was afraid to take my son out on outtings especially alone without nurses to help me. I want to share a verse that guided me when my son with type 1 was 14 years old, he wanted me to take him on a car ride with just the two of us in 2003. The verse that opened for me was “Strengthen the weak hands, and make firm the feeble knees. Say to those who are of a fearful heart, Be…See More
"Hi Katharina - my son had no head control and we used an Arjo Trixie Lift. It has slings that support your head. It is also portable so if you travel you take it with you. I loved it and it saved my back. ;-) Blessings to you. Lisa"
"Hi Annette, I'm not sure why it suddenly went private but it was about 2 sisters 1 was type 2 and the other was type 3. They looked early teens. I will do some more research and post the facility and Doctors name."
"I think now its the Isis SMNRx! There was a video posted a few days ago about a girl with type 3 out of Kansas MO who is in the ISIS clinical trial: New Drug for SMA shows Profound effects in clinical trial. It has now gone private!"
The list was getting too long -- b/c there are SO MANY GREAT ORGANIZATIONS raising awareness and funding to cure SMA. Please visit this link to see the latest list of resources available to the SMA community.