By: MJ Purk
4 years ago I
started an organization for newly diagnosed children with SMA,
Spinal Muscular Atrophy. I started it in March of 2004. I started my
organization because Brenda, my caregiver, had made me too many
quilts. Brenda learned to quilt a few years ago and by April she had
made me more quilts than I needed.
So that she
could continue to enjoy quilting we had decided that we were going
to help a friend who had an organization that gave blankets and toys
to children with SMA. Brenda told her mom about this organization
and her mom decided to help too. When Brenda came home from Easter
vacation she had several quilts that she and her mom had made. When
we contacted our friend she informed us that she was no longer going
to be doing her organization. We were unsure what we were going to
do with so many blankets, so I decided that we should start our own
organization, B4SMA (Brenda came up with the name). B4SMA stands for
Blankets for Spinal Muscular Atrophy kids.
blanket was sent to a little girl in Vermont. Her mom e-mailed us
the day they received the blanket, which was a Monday. She also sent
us a picture of her daughter with the blanket. When we woke up
Tuesday morning there was an e-mail from the little girl's mom
saying she had passed away. Her mom, in honor of her daughter, made
me a photo album so I can keep all the pictures of the kids that are
sent blankets in a safe place.
We have now
sent out about 607 blankets to kids with SMA. With each blanket we
send two or three beanie babies. Besides Brenda and I, we now have
several volunteers crocheting, knitting, tying, and quilting
blankets for B4SMA. We also have a few others who support our
efforts financially. All donations are greatly appreciated.
We hope to have more volunteers help us, as B4SMA grows. Once
families receive their blanket all we ask of them is that they take
a picture of their child with the blanket. I hope one day, when
there is a cure for SMA, there will not be a need for anymore kids
to receive blankets from us, but until that day I will continue to
purpose is to provide love and blanket hugs to SMA children and
their families. B4SMA was founded in March 2004 by MJ Purk and
lived with SMA for twenty years and has always enjoyed
supporting SMA families and their endeavors. Brenda has been MJ's caregiver and friend since 1991.
learned to quilt a few years ago and has since made MJ too many
Brenda started sending them to their buddies who also have SMA,
Spinal Muscular Atrophy.
SMA is a
neuromuscular disease that strikes young children.
type 1, the most severe type, but is a strong type 1.
kids with type 1 pass away before the age of two, but there are
many living past that with the help of new treatment options. MJ
wants to bring and give hope to newly diagnosed parents of a
child with SMA. This website is dedicated to all of the children
who have passed away from SMA, including MJ's sister Emma!!!
and Brenda would gladly accept any donations to help give
blanket hugs to more kids.
accept the following types of kid friendly fabric:
flannel, cotton prints, and finished blankets (crocheted,
knitted, tied, and quilted)
also accept small, clean, stuffed animals and monetary donations.
Monetary donation checks
or money orders should be made out to MJ Purk with
B4SMA in the memo line.
that, as of right now, B4SMA is not a 501(c) 3 organization)
also support B4SMA by shopping at their store -
B4SMA for information on how YOU can help SMA kids receive a