And the Lights Come On

THE CAMP FAMILY’S STORY OF HOPE

photography by Lee Anne Roquemore of Petal & Vine Photography

All parents face some of life’s deepest and heart-rending questions. Nothing compares to the
internal debating we do when it comes to decisions that affect our children. During their infancy, we wonder when to start doing x and begin doing y. We ponder with intensity what laundry detergent to use and who our child’s first teacher will be. We want to protect our children from every harm. We turn on lights when there are monsters under the bed. We make believe and read fairy tales in hopes that we can impart messages of love and hope, teach them right from wrong, and give them the security of safety. We want to ensure their happy and healthy futures. We worry about the decisions we make today and what they might mean for their lives ahead. All parents share these concerns. But, for some, the concern and questioning runs deeper still.

Some parents are faced with uninvited and life-altering circumstances.

Meet the Camp family.

Jeremy and Amanda Camp met in 1997 while at summer camp. They fell in love with each other, and with Lakeland, and married in 2003. After several years in church ministry and a life-changing decision to move into the Parker Street neighborhood, their family of two turned to three in 2008 when their daughter, Leyna, was born. Their family of three then grew to include Olivia, who is three, and Asher who is two.

The Camps live life from a place of hope. They exude a resilient and contagious hope-giving optimism. You feel it in Amanda’s cheerful, “Good morning!” when she’s out on an early-morning run. It’s apparent when you talk with her about what it means to be a mother who also has a career, and when you listen to why she and her husband were compelled to move to Parker Street in their twenties. You know it when they tell you about Asher, who suffers from spinal muscular atrophy (SMA) and when they impart the story of their journey dealing with his diagnosis and disease. Hope bubbles up when you see Jeremy toting their three children around town during the workday, when you listen to him parent intentionally and see him interact with their children. Hope spills out when Jeremy tells you about the progress Asher has made through the science of medicine and the generosity of community. Hope shines in six-year-old Leyna, who will walk right up to you, give you a hug, and start a meaningful conversation about her life; and in little Olivia who smiles into your eyes, a perfect strange, and asks you to play with her. And you will know hope when twoyear- old Asher rolls over to you in his wheelchair and reaches out to you with a joyful smile.

The Camps are a family that has faced (and continues to face) monstrous questions and found answers in unlikely places, though much mystery still remains.

When Asher was born in 2013, he was a happy, healthy kid. Over time, though, he was slower than the average baby to reach developmental milestones, but so was Olivia, the middle Camp
child. Amanda says, “Olivia didn’t crawl until 10 months old and didn’t walk until 16 months old. We affectionately referred to her as our “lazy baby.” So, when Asher struggled to bear weight on his legs or roll over, we weren’t alarmed at first.” As the weeks progressed, however, Amanda and Jeremy’s concern grew when Asher’s hand tremors and poor head control became more pronounced. “His hands were constantly clenched like a fist and they shook, too. When I nursed him I thought that maybe he had nervous energy and needed something to hold onto to calm down, so I would give him a blanket to grasp. Also, Asher’s head would constantly flop forward in the car seat, and as he got older it would bobble on his shoulders. We never connected the poor head control with his hand tremors.”

Thankfully, the Camps’ cautious pediatrician sent them to see a neurologist when he couldn’t find an infant reflex. The neurologist was to look for a hypotonia, weak muscle tone. “In many cases hypotonia is not associated with any disease or disorder but is merely a result of delayed development. Unfortunately, for us that was not the case,” Amanda recalls. Asher’s physical development continued to decline. At five months old, he could no longer push himself up from his belly. By one year old, he couldn’t move his legs, crawl, roll over, or even sit. “His arms moved and he could hold lightweight toys, but that was it,” Amanda says. At seven months old, doctors diagnosed Asher with spinal muscular atrophy, and the devastation set in. Through the tears, Amanda and Jeremy learned everything they could about the disease and began to figure out how they would turn on the proverbial lights and chase away this monster from their child’s life.

“SMA is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number-one genetic cause of death for infants. SMA is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating and often fatal muscle weakness. SMA affects approximately 1 in 10,000 babies” (curesma.org). According to the Gwendolyn Strong Foundation, about 1 in 40 Americans is a genetic carrier (gsf.org). SMA can affect any race and any gender.

A recent entry on the Camps’ awareness-raising Facebook site, Arms for Asher, gives us a glimpse into the terrors that come when SMA lives in one’s family: “It is that time of year in Florida when the evening thunder showers come out with a fury. Last night was the first storm in a long time. It was well past the hour since our children were tucked into bed when thunder and lightning hit so loud and bright that it shook and lit up the whole house. Not even a second later my three-year-old came running out of her room screaming and crying. She was so frightened she literally ran down the hall and jumped into my arms. Asher also woke up out of a dead sleep crying. My poor babies were terrified.

“After things settled and both children were comforted back to sleep, it didn’t take
long for my heart to feel the aftermath of this thunderstorm. My heart was torn to bits but not by gusty winds and fallen tree branches; it was torn to bits by SMA.

“SMA changes everything. It changes the way you parent. It changes the way you see your child. It changes the way you see other children. You can’t help but look at life through a different lens.”

“My little boy couldn’t run to his mommy when he was scared. He was just as terrified as my little girl but in a helpless body, too weak to pull himself out of bed and run to me; he couldn’t run down the hallway and jump into my arms. Instead, he had to scream alone in terror until I could run to him.”

Amanda recounts, “SMA changes everything. It changes the way you parent. It changes the way you see your child. It changes the way you see other children. You can’t help but look at life through a different lens. Sometimes that lens seems so crystal clear. You have a better appreciation for life. You can see what’s most important. Then, other times, the lens is dark and grey. You’re not sure how you even see things. Your hope can be murky. Your fears lurk around every corner. You look out and you see a very scary world.”

And all you can do is look for ways to turn on the lights.

Shortly after Asher’s diagnosis, the Camps found a lightswitch — and another hard question.
Through the help of their doctor, they became aware of a progressive clinical trial being offered in only four cities worldwide, one of which happened to be at Nemours Children’s Hospital in Orlando. Time was limited, as the enrollment and qualification window was closing quickly. Amanda and Jeremy had to make a life-altering decision in a matter of days: put Asher in the trial and risk the unknown effects of experimental drugs while gaining the possibility of a prolonged life, or keep him out and risk a life expectancy of less than two years. A clinical trial is at once “scary, emotional, and exciting,” Amanda says. “SMA is considered a pediatric terminal disease. There is currently no treatment and no cure; however, the National Institute of Health has targeted SMA as the neurological disease closest to treatment. Thanks to the pipeline of major drug programs in development, a cure is on the horizon, but the search for a cure comes at a price. [A clinical trial] is truly an experiment. Handing our son over to science in the hope that some unknown drug can save his life and the lives of thousands of other children is one of the scariest things we have had to do as parents. Knowing the fate of the disease is just as scary. It has been hard to balance the emotional roller coaster that is our life.”

She continues, “We reach such highs in the moments of joy and excitement when we see Asher do things that we never thought he would do, but we can quickly spiral down into the valleys when we are plagued by the reality of this disease. We constantly brace ourselves against the worst while we hold tight to the best times. SMA children are fragile. Common colds turn into pneumonia that threatens to collapse lungs, which leads to more severe things. Most weak SMA children have feeding tubes by Asher’s age and there isn’t a day that goes by that we don’t wonder if he will eventually need one. We monitor his oral eating closely and work hard to make sure he gets all of the nutrients and supplements he needs to stay strong. Despite our efforts, he may still need more nutrition support because that’s just how this
disease works. It doesn’t play fair. So, it’s hard to balance the emotions sometimes.

The Camps are a family that has faced monstrous questions and found answers in unlikely places, though  much mystery still remains.

“I recently heard someone say something like, ‘You’ve got to make your good times so good that when the bad times hit, they don’t feel so bad.’ Bad times can hit at any moment with SMA, so here’s to making some really freaking awesome good times!

“The results of the medication have been truly amazing [thus far]. It’s hard to compare Asher’s progress to children who do not have access to the drug, because every child is so different, but we know without a shadow of doubt that he is stronger than most children diagnosed with his symptoms at his age. The statistics speak for themselves: 50 percent of
infants diagnosed with Type 1 SMA die before the age of one, and a majority of infants do not live to their second birthday. Most become dependent on respiratory support, if they live. In comparison, Asher is considered to be thriving at two years old.” Yes, Amanda and Jeremy, and Leyna and Olivia turn on the lights for Asher every day. They live and laugh, celebrate small successes, and enjoy each other in every moment, staving off the monsters one day at a time. But, it’s also Lakeland that bolsters the Camps and turns on the lights for them. It’s in the mysterious envelopes of cash that appear from time to time to help with medical expenses. The lights come on when groceries arrive at their doorstep or a gas card in the mailbox. It’s in the kind words of encouragement and the smiles from their community in Lakeland that they find their strength. It’s in the fact that Asher can receive all of his therapy locally: aqua therapy, physical therapy, occupational therapy, and speech therapy. Through services available at Lakeland Regional Rehabilitation and Sports Medicine Clinic, Pediatric Therapy Services, and Early Steps, the Camps have found an extended family in the army of therapists that support Asher’s developmental progression. “When we dress Asher for aqua therapy, he gets excited and says, ‘See Karen?’ When we tell him he is going to therapy he says, ‘See Nikki?’ And, when we tell him Eileen is coming for therapy, he sits by the door waiting for her.” Asher’s pediatric team, headed by Dr. Eanett at Watson Clinic, has also been instrumental in Asher’s care. Although SMA is not commonly familiar here, the team works closely with the specialists at Nemours Children’s Hospital to provide the best pediatric care for Asher. Amanda stresses how fortunate her family is to live in Lakeland. “Many families in the SMA community do not have access to a care team like we do, or in many cases families need to travel long distances to receive the proper care for their child. Some families have had to go as far as to petition for the proper care for their child. To think if Jeremy and I had left Lakeland to pursue other ventures, Asher’s life could look substantially different, quite scary actually. It really makes us appreciate where we live more than ever.”

Lakeland has been the Camp family’s home for nearly 20 years. They have been embraced by
the arms of Lakeland in every way possible — emotionally, spiritually, and financially. In fact, prior to Asher’s diagnosis, they were an extremely quiet and private family. And, while they remain humble and quiet, they have become loud about two things: finding a cure for SMA and showing their gratitude for their community. In 2013, inspired by Lakeland’s loving embrace, they launched a Facebook page, Arms for Asher, as an outlet for and a point of connection with other families living with SMA. Amanda says, “[The Facebook page] has helped us to raise awareness. We’re up to more than 1,000 likes. That’s 1,000 people reached who may never have heard of SMA. SMA is one of the most common rare diseases, yet so many people have never heard of it. One in 40 people are carriers. That may seem like a big number, but it’s a very small number when your family is the one affected. Facebook allows us to give a voice to our story. Our voice helps us reach other families who are struggling with the same disease, reach supporters who can help us raise money for ongoing medical expenses, and raise money to help support research.”

As Asher grows and develops, the Camps are constantly amazed at his milestones. He is improving by leaps and bounds as compared to other children with SMA. Amanda and Jeremy often record Asher’s daily movements, soaking in the progress and gazing in reverie at the miracle that he is. “At first it was a bit of a heartache when Asher asked to walk. He started asking a couple of months ago. You can’t blame him; he’s constantly watching his energetic sisters walk, run, and bounce all over the place. So why can’t he? Well, we’ve started to help him ‘walk.’ The fact that he is actually mimicking the walk motion, lifting his feet and pivoting his hips is remarkable. The best part is when I tell him, ‘All done!’ and he responds with, ‘No!’”

That’s right Asher, you’re not done. You’re just getting started. Thank you for teaching us
to never give up. Thank you for turning on the lights for us.

special thanks to Diana Smith