Check out these GREAT videos of Ally. They are below and can also be found in the right column of her website www.angelally.com with additional short movies. There’s also a tab at the top of her website that will bring you to a page that includes video montages. I’m due to create some new ones or maybe I’ll find a teen or techy person who’d love to play with some of our family pics and music (any takers?)
These are four are from April 2010 and show some of the special things Ally can do at 4 years old with SMA Type 1.
A typical person might look at her limited movement in these movies and think “no big deal”, but we are soooooo proud of Ally being able to do these things. SMA affects ALL of her muscles – breathing, swallowing, moving, talking (but not her brain and feelings). Once a child loses movement because the body is not making protein for the muscles, it usually does not come back (atrophy means to shrink and die off). Somehow, Ally is gaining strength and finding ways to do new things as she gets older. She is on a clinical trial drug and some medicines that might help increase the protein production; these are hydroxyurea and liquid albuterol and we also use levocarnitine. None of these are proven treatments though. That is why we need funding for new clinical trials and especially gene therapy and stem cell treatments. A cure CAN be found in Ally’s lifetime, but funding is what is holding us back.
Please consider donating to our IL FSMA Walk which is June 12, 2010. Go to http://www.fsma.org/LWC/httpwwwsmarglly to make a donation and/or join our team!
We are so proud of Ally and all that she overcomes on a daily basis. She is truly an angel on earth teaching others about life, friendship, courage, faith…. Please never feel sorry for her. She is a happy child and we are all blessed to know her. I’ll admit, I’ve been a bit emotional lately with the deaths and illnesses of several sma children this winter and spring, but I need to celebrate the joy of having Ally and continue giving her and her sisters the BEST life possible.
Thank you friends and family for your continued prayers and support!!!
Tina, Ally and the Krajewski Family
Angel Ally Blog - SMA Type 1 
hi i dont have sma but i have physical disablities including cp and severe scoliosis ally is awesome!!!
carly australia
WOW….. I am so over joyed and emotional seeing Ally move and clap her hands, kness and toes. Thank you for sharing the beautiful and touching videos.. She is a true fighter and has overcome so much in 4 years. Tina, Ally is thanking you over and over for believing in her. Everyone can see that by all her accomplishments. She is so thankful that she has a strong, loving, caring and powerful mother and a huge support group. You Go Ally… Keeping Fighting. Your are Truly AMAZING. :-))
I know I dont know Alley but im a nurse and the child I care for is a 9 yr old with SMA type 1 and I was searching for info on it when i stumbled across your website and seeing her move her hands and ride the horse made me burst out into tears! My patient doesnt have that much movement and the fact that your giving her opportunity to experience as much as possible is so wonderful! My patients family is the same way but trust me there are so many families that just lock their beautiful babies away. I wish I had money to donate but I can always send my blessing to you and your family! I loved seeing the wonderful things you do for her. I truely know how amazing it is to see her move those hands together!