Help my family fight SMA (spinal muscular atrophy)
Last edited Wed Jan 4, 2017, 12:48 PM - Edit history (1)
My niece and her husband in Jacksonville FL, recently found out their second child, was born with Spinal Muscular Atrophy (SMA)
If you can keep them in your thoughts, prayers and if possible make any financial contribution towards the cost of her treatments it would be greatly appreciated. I know this isn't a great time of year to ask people to give but if you can find it in your hearts any amount would help.
At four months old they discovered that although she seemed happy and healthy she wasn't moving her legs as much as expected and that led them to seek answers only to find out about this rare defect. In the past it wasn't likely that babies with SMA would live through their first year. But there are some clinical drug trials that are pushing that giving some families hope.
They are holding a benefit dinner in Jacksonville Fl on January 11th when she turns 7 months old to help if you're in that area and would like to attend.
You can read more about my niece and her daughter on their go fund me page
https://www.gofundme.com/Rall4Remi
You're never fully prepared for news like this, especially when it comes to your children. In only one week we went from thinking our baby girl was "normal" and healthy to wondering if she'll even make it to see her first birthday. We spent the next two days mourning the idea of losing our sweet girl, who was so happy and full of life right in front of our eyes. We cried many tears and had many hard talks about her future. After religiously looking on social media for families whose kids also had SMA, we found hope - so much hope. There is a trial drug called Nusinersen that is helping children sit, stand and a few even walk - things that have previously never been possible with SMA Type 1 kids. This hope was all we needed to get off the couch and fight for our baby girl’s life. After meeting an amazing genetic specialist, Dr. Finkel, at Nemours in Orlando, Remi got blood work done and was confirmed SMA Type 1 on November 7, 2016. As much as we didn't want the tests to come back positive, we were prepared for the results. Thankfully Dr. Finkel is an SMA guru who is involved with the development of nusinersen and was able to get Remi started the next week on the treatment with nusinersen. We have been so incredibly blessed to have been placed in the right hands at the right time. Remi has now had 3 treatments of Nusinersen.
They are holding a benefit dinner in Jacksonville Fl on January 11th when she turns 7 months old to help if you're in that area and would like to attend.