How a Community Becomes Like Family When We Need It Most
As others set off fireworks on Independence Day, a Facebook post set off personal waterworks. It also determined the focus of this column.
Credit angel intervention.
***
Molly Grantham is an anchor for WBTV, a local TV news station two hours south of us in Charlotte, North Carolina. In August 2020, I came across an article Molly had written. She described her ordeal of delivering her baby boy in the hospital, as her daughter was exposed to COVID-19. The entire family soon tested positive for the virus. Molly, who also tested positive for pneumonia, continued taking care of her newborn. I became a fan.
Fast forward to July 4. Molly’s name again popped up, this time highlighting Aaron Collier, one of her Molly’s Kids, a regular segment on her show featuring children facing health challenges. Aaron, a seventh-grader, was diagnosed with osteosarcoma, a type of bone cancer, and he needed a miracle. Aaron lives with his grandmother, who also is his full-time caregiver. They live in Ashe County.
We live in Ashe County.
***
Today, July 13, is my brother Paul’s birthday. On this date in 1997, Paul, a physician, and his family visited our family’s lodge. My husband, Randy, asked if Paul would examine our baby, Jeffrey, who had exhibited abnormal breathing since his birth two months earlier.
Paul’s exam revealed that Jeffrey had no reflexes and a dull-sounding lung. Paul somberly explained that we’d likely be referred to a pediatric neurologist at the scheduled checkup the next morning.
The Night from Hell came the following evening, July 14, when we were slammed with a likely diagnosis of SMA, and its torturous prognosis of death within four years. It was followed by the Morning from Hell, as grueling medical procedures — including a blood draw from Jeffrey’s forehead — were performed to confirm it.
The genetics counselor then quietly halved Jeffrey’s life expectancy.
Our world crumbled, but family, friends, and fellow SMA families I met via our new internet access helped pick us up, one foot at a time. And so did our rural community in Ashe County. It didn’t seem to matter much that we were still newcomers. They welcomed us like family.
***
I consider myself an optimist. Although there is no shortage of full-moon moments, I look for something positive because I know it’s there, somewhere, and I need to find it.
Our in-person and online SMA communities exceeded all expectations of positives after July 14, 1997.
Although the post-diagnosis days were hazy, I knew I needed to get the word out quickly. I mailed letters to everyone we’d ever met regarding SMA, along with prayer requests. Some recipients shared my pleas. Words are inadequate for the generous responses from Mountain View School, where our older children, Matthew and Katie, attended.
I don’t remember how it came about, but an article about Jeffrey was published by our local newspaper. Before I knew it, help arrived in various forms: Utility bills were paid anonymously, and cards and letters landed in the mailbox. I’m confident we’d never before had so many prayers on our behalf.
Our brief SMA assignment ended on Nov. 4, 1997. The kindness from the Mountain View School and community families lingered through Christmas and beyond. I still can’t imagine being anywhere else.
***
Several Facebook pages highlight Ashe County news and announcements. Thanks to modern technology, news spreads fast.
While the stunning scenery and quaint persona of Ashe County — “the coolest corner of North Carolina” — lures a plethora of tourists, the community continues to thrive on helping others. The fundraisers are varied and plentiful: barbecues and other suppers, church singings, yard sales, raffles, donation opportunities, and whatever else comes to mind that might help specific families.
Aaron’s name is on several community efforts.
A local church announces a July benefit for Aaron Collier, a seventh-grader diagnosed with osteosarcoma. (Courtesy of Martie Latham)
I’m not sure why this incomprehensible assignment affecting someone I’ve never met has triggered several teary episodes. Maybe it’s the reminders of our own assignment, or remembering how my parents handled watching their grandbaby’s health decline. Maybe it’s because the risk of childhood cancers is still elevated for our granddaughter, Clara, who was diagnosed with Beckwith-Wiedemann syndrome.
Maybe it’s because I’m part of a community that embraces family. Maybe it’s just because.
***
Communities, both live and virtual (including SMA News Today and its parent company, BioNews), are vital to our well-being. Connections to genuinely caring folks giving real hugs helped keep me upright after Jeffrey’s diagnosis. Likewise, connections to fellow SMA families through online message boards was a godsend. During sleepless nights, someone, somewhere in the world, was awake to respond to a post. And they understood completely.
Aaron’s 12th birthday is also today, 25 years after our own surreal assignment unofficially kicked off by my brother, in the middle of Sarcoma Awareness Month. Our community celebrates this sweet boy and his beloved grandmother.
Aaron Collier and his grandmother, Cathy Campbell. (Courtesy of Martie Latham)
One suggestion is wishing Aaron a happy birthday on area marquees. The knowledge that he may be too weak to see them in person bolsters prayers for peace, comfort, and an upcoming joy we can only dream about here on Earth.
Aaron, your community family is rooting for you.
Aaron Collier, a true warrior. (Courtesy of Martie Latham)
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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