Our Lives

From shell-shocked parent to warrior

August 3, 2013 

CindySchaefer.AL.050113.JEL

Cindy Schaefer.

JLEONARD@NEWSOBSERVER.COM — JULI LEONARD

  • Spinal muscular atrophy

    Spinal muscular atrophy is a genetic disorder that affects spinal cord nerves linked to voluntary muscles throughout the body. SMA may impair the ability to crawl, walk, breath or swallow. There are a number of types of SMA; some may be fatal. The disease affects approximately 9 out of 100,000 children born.

    Source: National Institutes of Health

Being told your child might die rocks your world. When the culprit is as unforgiving as spinal muscular atrophy, you fear you will never recover.

The raw, gut-wrenching pain of that blow is still fresh in my memory, even though it happened more than 18 years ago. And I remember what happens next. Once you regain your balance, the knee-jerk reaction is to fight. Because you just know that if you give it your all, surely you can beat this monster.

Even before Kevin’s diagnosis, we had him in physical and occupational therapy. After we knew what was wrong, we went into overdrive. We saw specialists from here to New Jersey and beyond. We searched medical libraries and talked to anyone who would listen.

A turning point came when we drove to Chicago to attend a Families of Spinal Muscular Atrophy conference. While parents traded tips on wheelchairs, feeding tubes and breathing machines, dozens of kids zipped around the lobby in chairs, beyond thrilled that for a few days they were just like everyone else. It was the camaraderie we had been craving.

What we since have learned is that family and friends are no more inclined to understand the kind of world we live in – or how different that world is from theirs – than anyone else. They may come around one day, or they may never get it. But this family – our SMA family – always gets it.

These new connections helped us breathe a little easier, and having access to researchers clued us in to what was needed. Individually, each researcher would tell me that what stands between SMA and a cure is money. We left that conference and got to work.

For several years, we ran a local chapter of FSMA, raising many thousands of dollars for research and offering support to area families affected by the disease. The critical need to increase awareness landed us on TV, radio and in the newspaper. The harsh reality is that no matter how much I dislike being in the spotlight or speaking before an audience, sometimes it is a necessary evil.

The thing is, parents of children with special needs are by default both warriors and negotiators. Even the meekest of us can turn into ninjas when it comes to our child. We perfect the art of knowing when to be brash and when delicacy is required. It is our job to navigate the minefields standing in the way of our children, whether it be at home, at school or in a parking lot. It is rarely easy, and it’s often frustrating, but the payoff is priceless.

It still surprises me that Glenn and I are now the SMA veterans – the ones shell-shocked parents come to for answers to questions that have no answers. That role weighs heavily on me. I know that parents new to this club nobody ever asked to join are desperate for someone to tell them that SMA can be beaten and that all the hours of intense therapy will make their child stronger.

And while I can show them living proof that their child can have an amazing life filled with untold joy, I can’t tell them what they want most to hear. SMA is still incurable. And there’s nothing we can do that can stop its progression. Not yet, anyway. But if we keep fighting and we keep the researchers working, one day it will be different.

Mimi and Kevin Chan of Cary are right where we were all those years ago. Their cute-as-a-button 2-year-old son, Brady, was diagnosed with SMA last year. Once the fog had cleared and the tears slowed, the Chans rolled up their sleeves and got down to business. In addition to working the system to get the best possible care for Brady, they have thrown themselves into spreading the word about SMA.

On Saturday at 7 p.m., the Chans will be hosting the 2013 Love, Hope and Strength Fundraiser at the Flanders Gallery in downtown Raleigh. They are counting on a huge turnout. For them, this night is personal: Their little boy’s life is on the line.

The event will feature art, live music, an auction and cocktails and all money raised will go to support SMA research; tickets are available online or at the door. WRAL-TV news anchor Debra Morgan will act as emcee. And I will be one of the speakers. Lord, have mercy.

Shaefer: cschaefer63@nc.rr.com

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