In the next few minutes, I’m going to introduce you to a baby named Cole Daniel Webb. Cole must fight for his life every day. First, let me tell you about how I came to know Cole, his family and his condition.

My mother and sister are avid cross-stitchers, and through this hobby have become members of a message board known as 123 Stitch. They enjoy talking about their hobby and everyone’s life in general. Through this board, we’ve all been made aware of a genetic disease that threatens the lives of young children.

Cole’s mother, Kristin, is a member of the message board and has shared her life and her hardships with everyone. Kristin’s story is far more touching than most. Her son has a horrific disease known as Spinal Muscular Atrophy, also known as SMA.

SMA is a muscular disease genetically passed from parent to child. You cannot “catch” SMA; it’s not something that is contagious. Cole has SMA Type 1. With Type 1, most children are diagnosed prior to the age of six months, but more often before the age of three months. Occasionally, symptoms start while the infant is in the womb. When a baby is diagnosed with SMA, they’re not able to hold up their head, roll over, sit up, or walk. All of their muscles are weak, the weakest ones being the legs, upper arms, and neck. Their chest may cave in and they may have a big, round belly. SMA will affect all muscle systems, which include, sucking, swallowing, and digesting food. The baby has a high risk of becoming ill or of getting an infection. Even a common cold can lead to pneumonia, which is how most SMA children die. There are two major decisions to be made with Type 1. Parents need to decide whether or not to add a feeding tube when the child can no longer swallow on there own and which will also prevent pneumonia. Also, parents need to decide whether or not to put them on a ventilator or breathing machine when they experience respiratory failure. These are very tough decisions to make. Most people are not aware of how hard this disease is for the family and friends of a child stricken with it. They have to make the hardest decisions for the child. Instead of being able to ask questions like, “Does he need a hat today?” they find themselves asking questions like, “Should we put him on a ventilator when things get to hard?” For these reasons and many more than I can name, Kristin and her husband cherish every moment they have with their son.

Now, Kristin and her husband, Daniel, share their lives with the members of the message board. Everyone that’s heard the Webb’s story has been touched by Cole’s struggle for life. We see ourselves as Cole’s Aunts and Uncles, we believe we ARE one family.

Many members of the message board wanted to do something special for the Webb family. It was decided that together they would stitch a quilt. The finished quilt would serve as a special memory for the Webb family and represented things that were close to their hearts. Many members of the board made a quilt square, so many in fact that Cole ended up with two quilts and a pillow! The quilt had many different pictures on it, but it also contained angels because Cole is OUR angel.

A board member named Linda took on the responsibility of sewing the quilt together. She too lives in New Jersey and is a generous and wonderful person. Upon completing the quilt Linda’s wish was to personally deliver it to the Webbs. However, the Webbs are not close neighbors to Linda, they live in the central part of the United States. A generous Passaic County 4-H member was also touched by Cole’s story.  She donated her frequent flyer miles so that Linda could make the trip. Linda got to meet our hero Cole, Kristin, and the rest of the family.
The quilt story doesn’t stop here. Together Kristin, Linda and others have begun the C.O.L.E.’s Quilt Project. That stands for Creations of Love Etc. They have established a website and are taking requests from other SMA families who wish to have a quilt of their own. Many board members have dedicated their talents and time to making these quilt squares, and those who don’t have the time have donated money and the necessary supplies. Through their efforts, the awareness of SMA and the love for these children continues to grow.

Cole has touched the hearts of many on the board and they care for him deeply. Not a day goes by that someone isn’t posting a message to find out how Cole’s day went. They do just about anything to help him and his mom; we are always there for support and love. Cole has touched more lives in his short time on earth than most people do in an entire lifetime.
I too have been touched to hear about Cole and his situation. It’s truly hard to understand how this illness can so easily take a baby away from those who love him.

If you’re interested in learning more about Cole and others with SMA his website is www.our-sma-angels.com/cole. If you would like to check out Cole’s growing cyber family, check out the message board on www.123stitch.com.

In closing, I wish to leave you with a quote that Kristin repeats daily:

“It’s not how deep the sea.
It’s not how wide the sky.
It’s how sweet the time,
From hello to goodbye.”

-Written by Elizabeth, age 14.