giving back

Spinal Muscular Atrophy: Our Greatest Miracle and Our Greatest Test

giving backmoms making a difference

When you're a parent there are milestones that you look forward to. The biggest would probably be when baby stands on his or her own and their first steps. My husband and I have five kids so we had an idea of when our youngest child would start.

Spinal Muscular Atrophy

At nine months our youngest child, Gabriel was right on track to start walking soon. He was pulling himself to his knees just like our other children. Then that was it—instead of progressing he started regressing and having tremors all the time. My husband and I started worrying about him maybe being cold  so we started putting warmer clothing on him.

After countless phone calls, trips to the doctors, and various therapies including Early Intervention we were given an appointment for a child neurologist to see what was causing the tremors.

April 15 came and we arrived at the appointment. We were told the appointment wouldn't take more than 45 minutes tops. The doctor came in and proceeded to look over Gabriel . She started tapping him with a reflex hammer. Normally when someone is tapped with the hammer their reflexes react. Gabriel's didn't, so she pulled out this chart and started tapping—okay more like thwacking, or so it seemed to us. Across the street we go for blood work.

Four hours later the doctor calls us into her office, she tells us to sit down. She  says, "Your son has Spinal Muscular Atrophy. Enjoy the time you have with him..." We're certain that she said other things afterwards, but honestly we were in such shock we didn't hear anything else.

The first week all I did was cry. The Thursday after the appointment Uriah looked up Spinal Muscular Atrophy. He found the website, Families of Spinal Muscular Atrophy (FSMA). There he found out about their work in raising funds for research. They even sent us a huge care package with all sorts of toys that would help Gabriel strengthen his upper body since he will be in a wheelchair most of the time.

What most people don't know is that one in forty people are genetic carriers of the SMA gene, SMA occurs in 1 in 6000 live births and it is the number one genetic killer of children under age two. SMA does not discriminate, there are people across the entire social economic spectrum who have SMA. If you need a spinal surgeon, provides specialized care and support for managing and treating spinal issues.

The one thing people always ask is, "What can I do?" We tell them learn about SMA, write your elected officials to let them know that we need funding. Find out if there are events to raise funds in your state. If you can, please attend them, but if you can't let people know about them whether it be via Facebook, Twitter, your blog, or in person.

We started a Facebook page for Gabriel to help spread the word about SMA.

The more people know, the better the chance we have of finding a cure for SMA. Until next time...

What can you do to give back to children with disabilities?

I need to thank two very special ladies for the above photo of Gabriel, Brenda Hanson and MJ Queen-Purk. Their digital wizardry made this great photo possible.

I am a stay at home mom to five great children—two daughters, ages 18 and 10; along with three great sons ages 7, 6, and 22 months, as well as a rescued Shetland Sheepdog. I am also married to the world's greatest guy who makes a wicked baked ravioli. I like to read, collect antique books, bake, travel, spend time with my family, and enjoy a good cup of coffee.

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