M.J. is wheelchair-bound and uses a ventilator to help her breathe. You’d think that would slow her down. But you’d be wrong! M.J. has her own web site, started her own non-profit charitable organization (CaringBridge) and is quilting up a storm of love and compassion for children diagnosed with the same disease she suffers from, SMA (spinal muscular atrophy).
SMA is a genetic muscular disease. There is a 25% chance that a parent carrying the recessive gene for the disease will pass it on to their child. Children with SMA are not mentally retarded – SMA affects only the muscles. In fact, many children with SMA have demonstrated higher than average intelligence.
There are 4 types of SMA. Type I and Type II are the most severe and affect only infant children. Type III affects older children (18 months to early adolescence) and Type IV affects only adults.
Type I is usually diagnosed at about 3-6 months of age. These children are unable to hold their heads up straight, rollover, crawl, sit up without support, or walk. The child’s sucking, swallowing digestion and excretion are affected, and they usually have trouble getting proper nutrition. Often what starts out as a simple common cold progresses to pneumonia then to respiratory failure. Nearly 80% of these children die in their first year of life.
Type II is usually diagnosed sometime before they reach 2 years old. They are usually able to sit without support, but require assistance to do so. Some are able to crawl or stand with braces, and they usually do not have a problem with swallowing or feeding.
In all types of SMA, muscle weakness progresses over a period of time and children with Type III are usually wheelchair bound due to progressive muscle weakness. The diagnosis of Type III SMA is usually made between 18 months and early adolescence.
Type IV is usually only seen in adults, and appears around age 35. The disease generally progresses over time and muscle weakness becomes more profound.
But with determination and drive, M.J. isn’t letting SMA stop her. In April of this year she started an organization for children newly diagnosed with SMA. Like many entrepreneurs, the idea for her organization was birthed out of an over supply of an item that just needed a niche market. Brenda, M.J.’s caregiver, had made too many quilts (after learning how to quilt a few years earlier). So, M.J. and Brenda decided to donate the quilts to a friend who had started an organization that gave blankets and toys to children with SMA. When contacted the friend to tell her about all the quilts they were going to donate, but the friend had to break the news that the organization was no longer doing business. You’d think that would have stopped M.J. but, you’d be wrong again!
Uncertain of what to do with so many quilts, M.J. decided that she would just start her own organization, B4SMA (which stands for, “Blankets for SMA” kids). M.J. admits that it was Brenda who came up with the name!
Their first blanket (quilt) was sent to a child in Vermont. “The child’s mom emailed us the day they received the blanket, which was Monday” says M.J. “She also sent us a picture of her daughter with the blanket.” M.J. states that when she got up Tuesday morning there was another email from the little girl’s mother stated that she had passed away. Her mom made M.J. a photo album so she can keep all the pictures of the SMA kids that are sent blankets.
So far B4SMA has sent out about 20 blankets to kids with SMA. With each blanket they send two or three Beenie Babies. And the organization is growing – besides M.J. and Brenda, Brenda’s mom, aunt and grandma are all now “employees,” busy quilting blankets for B4SMA. And M.J. adds that there are others who want to volunteer.
Once a family receives a blanket, all B4SMA asks is that they send them a picture of their child with the blanket. M.J. adds, “I hope that one day when there is a cure for SMA, there will not be a need for anymore kids to receive blankets for us, but until that day, I will continue to send blankets.”
To find out more about M.J., B4SMA, or to make a contribution to B4SMA, go to, www. caringbridge.org. To find out more about SMA go to, www.smasupport.com.
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