B4SMA: Blankets for Spinal Muscular Atrophy

Hello everyone:

This is a new website of MJ's, created to help other kids diagnosed with Spinal Muscular Atrophy. MJ is accepting donations along with quilting materials to make blankets for newly diagnosed children with SMA.


My name is Brenda and I work with MJ. I learned to quilt a few years ago and have since made MJ too many quilts. We started sending them to her buddies who also have SMA, Spinal Muscular Atrophy. SMA is a neuromuscular disease that strikes young children. MJ has type 1, but is a strong type 1. Many 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!!!

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By: MJ Purk


This year I started an organization for newly diagnosed children with SMA, Spinal Muscular Atrophy. I started it in April 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.
Our first 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 20 blankets to kids with SMA. With each blanket we send two or three beanie babies. Besides Brenda and I, we now have Brenda's mom, Aunt, and Grandma crocheting, knitting, and quilting blankets for B4SMA. We also have a few others who want to volunteer. 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 send blankets.












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Journal

Sunday, December 7, 2008 5:37 PM CST

Please visit our NEW journal! http://www.caringbridge.org/visit/b4sma

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Hi everyone:

Happy Holidays to everyone. Once again, we have fallen behind here too. October was an extremely busy month for B4SMA. We sent out 26 blankets in one month which is sad in the fact that the vast majority were newly diagnosed kids. Let us hope that a cure can come soon since more and more kids are being diagnosed. I�m not sure how many remember or even know. I was diagnosed early back before there was a test along with my sister Emma. Back then, in 1988, SMA was a rare disease and I did not really know of anyone else for many years. Today, 20 years later, doctors are still saying the same thing, that SMA is a rare disease and to take your kid home and love them until they die. It is sad that despite their being a blood test now and can be tested prenatally, having 3 specific medicines that slow the progression of SMA down, and all the research being done, most doctors � specialists especially, will tell you nothing except that your kid will die right away. Isn�t it amazing, that with SMA being a rare disease, we are at 618 blankets in less than 5 years.

We have lost a few of our kids in the past 3 months and are always saddened by each and every one. MJ started a tribute page to all the angels that have lost their lives from SMA.

Special thanks to everyone who keeps us supplied with blankets and beanies. Each blanket that is sent out keeps the hope that their one day will be a cure and that we are here for each and every family, regardless of what is going on. We are here to listen to you and help you in any way possible. If you need something, please don't hesitate to let us know.

To see all the blankets we have been sending out, don't forget to check out our website where all the kids can be seen.

Special prayers are going out to all the SMA Kids who are struggling right now. They can be seen at B4SMA prayers

On another note, the 3rd Annual SMA Family calendar is available for sale. It is up at the B4SMA store , so make sure you check it out. Profits made from the calendar will be split between Marshall's Miles and SMA Support. They make awesome holiday gifts and it is a great way to spread awareness, so buy early and buy plenty. There is also an awareness shirt available at the store too. SMA Awareness Shirt Right now, we have sold 125 calendars and are hoping to sell more.

We will continue to provide blankets to the kids until a cure is found!
Love and blanket hugs to everyone.

That is all for now. Please continue to check the photo album to see new pictures as they are updated.
The entry above this update is a journal MJ wrote describing B4SMA and why we do it. Hope you enjoy it!!
The picture above is why we make blankets to give to kids. Just seeing the little hand holding on, says it all!
We would gladly accept any donations to help give blanket hugs to more kids. Thanks!!
To see all the kids pictures separately, visit B4SMA

Read Journal History

Hospital Information:

Please e-mail us for donation information!

Links:

E-mail Author: B4SMA_Kids@yahoo.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.