Hello Friends and Family,
We are looking for your help and support! As many of you know, our youngest
daughter, Ally Krajewski has Spinal Muscular Atrophy Type 1. Overall she is
doing well and continues to beat the odds staked against her. She is now FIVE
years old and attends pre-school everyday. Ally is learning to talk by operating
a special computer with her eyes and is beginning to drive a loaner powerwheel
chair. Since she got her trach (breathing tube) in July 2011, she has stayed
healthy and out of the hospital (knock on wood). We continue to focus on
enriching Ally’s life and praying that a CURE or treatment for SMA can happen in
her lifetime. Medical advances in SMA have been amazing and this really could
happen with funding and awareness.
Each year, our family does 2 fundraising walks (one for Families of SMA and
one for Muscular Dystrophy Association). Occasionally family and friends make
donations to the Angel Allyson Fund NFP to directly help with Ally’s uncovered
needs and special things to enrich her life. I can not thank you enough for all
of your emotional support and prayers (which are most important). Many of you
have donated in the past and should not feel obligated to donate every time.
However, f you are interested in making even a $5 donation, it REALLY does help
as we work towards a CURE and support for the kids fighting SMA each day.
Our upcoming fundraiser is the “Walk and Roll” for Families of SMA on June
12, 2001. We will be doing a 2.5 mile walk at Independence Grove in
Libertyville, IL. The walk begins at 10:30 am with events and fun before and
after the walk. Please consider joining the Ally’s Angels Team as it is always
nice to see friends and family come together for a special cause. You can even
meet some of Ally’s other SMA friends. If you cannot join us, please consider
making a donation in honor of Ally. We have a personal webpage
(http://www.fsma.org/LWC/ally) or you can give it to a family member. Checks are
payable to FSMA. Remember, every $1 brings us one step closer to a CURE!
For those interested, the MDA Walk will not be at the zoo this year. Instead
it will be a Muscle Walk at an INDOOR location possible on December 3rd. Both
Families of SMA and MDA are working towards a cure for SMA and offer families
support and hope.
Families of Spinal Muscular Atrophy is an important charity to us because: –
One in 6,000 babies born this year will be diagnosed with SMA; – They support
all those affected by SMA with critical information, resources and equipment; –
Research funded by this amazing organization is providing HOPE for the
development of a treatment and cure.
SMA is a devastating genetic disease that destroys the nerves that control
voluntary movement. Children born with SMA may never crawl, walk, or even lift
their head. Families who live with SMA turn to Families of Spinal Muscular
Atrophy for information, guidance, encouragement and most importantly; HOPE.
Making a donation to Families of SMA is easy, secure and completely
confidential. Just click on the link and follow the steps!
http://www.fsma.org/LWC/ally
Thank you for joining me in my quest to support Families of SMA. Your
tax-deductible gift will bring us one step closer to creating a world where
Spinal Muscular Atrophy is treatable and curable.
PS – To see what Ally’s been up to, check out our blog at www.angelally.com.
There is a link on this site to our picasa website that includes MANY pics and
videos too.
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Angel Ally Blog - SMA Type 1 