My name is Allyson Stephanie Krajewski
I was born on February 2, 2006
I have Type 1 SMA – “Spinal Muscular Atrophy”
The disease, Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two, is a group of inherited and often fatal diseases that destroy the nerves controlling voluntary muscle movement, which affects crawling, walking, head and neck control and even swallowing.
| • 1 in 40 people carry the gene that causes SMA |
| • SMA effects all ages, races and genders |
| • 1 in every 6,000 children are born with SMA |
| THERE IS NO CURE, BUT RESEARCH PROVIDES HOPE. |
Although Allyson has SMA, one of the 43 muscular dystrophies, she has beaten the odds of a life expectancy of 1-2 years and is doing overall very well. We used non-invasive respiratory care for 4 ½ years and Ally got her tracheotomy July 2010. We try hard to spread awareness about SMA and the options and hope for SMA children. Ally traveled to Stanford, CA to participate in a clinical trial for 2 years and is still receiving a drug called hydroxyurea to help her body make protein that it is unable to make for moving, swallowing and even breathing. She also takes liquid albuterol and tumeric for movement. So far the results have been promising. There is hope for children with SMA and a treatment and/or cure could be found in the near future, hopefully in Ally’s lifetime.
In the meantime, we cherish every hour, day, month, and year we have with Allyson. She has already taught those around her the true meaning of life, friendship, love, courage and faith. Her brain is unaffected by SMA and she is a very smart little girl with bright eyes. She attends school and has many friends. Ally is learning to drive a power wheelchair. Using her eyes and/or a switch, she can talk and play games on her Dynavox computer or school laptop. She enjoys spending time with her two unaffected sisters (Melissa 12 and Kristyn 19 years old), two loving parents (Tina and Billy) and lots of family and friends who are praying for her daily
Mom’s Information – Tina Krajewski: tina@AngelAlly.com 773-283-7211
Donations can be made to Allyson Krajewski
Mailing Address : 3614 N. New England – Chicago, IL 60634
Paypal donations can be made to tina@angelally.com and will be transferred to Ally’s account.
Angel Ally Blog - SMA Type 1 
Hi, really like the website and found it very encouraging as my niece Laya was recently diagnosed with sma type 1. She is nearly 8 months old and naturally her mum and dad would do anything to hear some positive news as her prospects appear quite grim. I’m unsure as to whether your healthcare in America is more advanced in this field but clearly in the Uk the doctors don’t appear to want to offer any treatment just palliative care as they point out there is no known cure as yet.
I will show them this website and hope it offers some comfort and hope. keep up the good work
kind regards andrew
Dear ally,
its me mavra from your class in stock school pre-k, thanks for the letter u sent me. your a good friend. hope u are good very soon
sincerely, your classmate
Mavra-
Hi Ally, we are really looking forward to your birthday party at Orbit Skate Center!
Thank you for checking out Ally’s site. We know it is going to be an INCREDIBLE birthday/fundraiser at Orbit Skate Center!!!
Hi Ally! It’s Lila from Rm 306 @Coonley! I think that there is so many amazing things about you that other people just don’t see. But I see every wonderful thing about you! Your doing great! I hope we can be friends because I think your awesme!
Love,
Lila Peterson Rm 306
Lila,
Thanks soooo much for taking time to visit Ally’s webpage. I read her your note and it made her happy. She is happy to have another friend. You are a sweet girl. See you at school.
Ally (and her mom).
Hey Ally! I hope your having a great weekend so far even though tomorrow is Monday witch means school. I can’t wait till your birthday! I also want you to meet my sister there since I think she’s coming. Her name is Emma and is 7 years old. She is really looking forward to meeting you. See you at school Ally!
XOXO,
Lila and Emma😘
Hi Lila and Emma,
I read your post to Ally and she was happy to hear it. She is glad to have you as a buddy and also hopes you can make it to her Birthday party. Ally went ice skating with Girl Scouts this weekend and hung out in her room watching movies. She looks forward to seeing you at school!!
Love Ally (and her mom, Mrs Tina).
Hi ally this is Ryan foley from Coonley I am so happy to be your friend
Thank you sooo much Ryan
Hi Ally. It was great hearing from your mom today. She called the firehouse at Elston and Roscoe to tell us about you, and your struggles. We went out today for MDA (Fill the boot) collections with you and your family in mind. God bless and may these collections help you get what you need. CFD LT. FM
Thank you sooo much for your kindness, time and efforts. It really means a ton to our family. If you took any pictures, you can email to tina@angelally.com. Thanks again!!!