Always And Forever Keeping the Faith

Perhaps you met the sweet and spunky soul who captivated an entire community with her smile and her bravery in beating cancer not once, but twice.

Faith was only six the first time she was diagnosed with cancer, and the entire community rallied around Faith and her family with "Keeping the Faith" signs and shirts and a wide variety of fundraisers. Only two short years later, her cancer came back, this time in the form of leukemia. That same sweet smile showed bravery and courage most of us can never imagine. And though Faith would beat cancer that second time, she would pass away from complications of the treatment, when she was only nine years old.

Stacy and Grace at the Freezin' For a Reason polar plunge.

Yes, there's no question that Faith was an inspiration to so many, and her memory continues to live on through Faith Sent Us volunteers, who remind all of us to do random acts of kindness in Faith's name.

But while Faith courageously fought her battle in the public eye, there's someone behind the scenes who fought her own battle, and one that inspires me as a mom each and every day.
While Faith was fighting cancer, her mom, Stacy Lamb, was fighting for her daughter with everything she had. It's a battle I'm familiar with, as we struggle every day to make sure all of Grace's needs are met.

But in a lot of ways, I'm lucky. In six and a half years, Grace has only spent one night in the hospital. We were seriously there less than 24 hours, and by the morning, I was counting the minutes until they let us go home. Being with a sick child in a hospital is hard.

I don't know how many days Faith spent with her mom in the hospital, but I'm guessing it was in the hundreds in her two bouts with cancer. If you've never tried to sleep in a chair next to a hospital bed of beeping machines, count your blessings over and over again.

But the hardest part is the worry and helplessness that overtakes your entire being. In a heartbeat, you would take over all your child's woes as your own, just so they didn't have to hurt. And knowing that you can't take away that hurt is just about the hardest thing in the world.

So, let me tell you about my friend, Stacy. She's one of the strongest people I've ever met because she met that battle head on. She spent countless nights in the hospital,worrying and praying that someday Faith would get better. She was (and still is) that mom all of us wish we were.

I got to know Stacy in working on news items for the paper. She made sure Faith got to do some really amazing things in her short life, like throw out the first pitch at a St. Louis Cardinals game and see Justin Bieber in concert. I always enjoyed talking to Stacy about Faith when I was putting things in the paper. She always had a smile or a laugh, and never seemed to be worn down by the challenges she must have faced every day.

And then she had to fight the biggest battle of them all, losing her sweet Faith. With grace and poise, Stacy joined hundreds at a prayer vigil and thanked a community who would always "Keep the Faith."

We waited in line at Faith's visitation and when it came time to give Stacy a hug, she looked down at Grace, and told me if there was ever anything she could do to help us, just to let her know.
And I've come to know that's just the kind of person Stacy is. She reaches out to help those who need it with a smile. Faith Sent Us volunteers are currently organizing a pajama drive for the children's hospital in Springfield, and they continue to raise awareness for pediatric cancer. Most recently, they are rallying around the family of leukemia patient Layton Pezold of Litchfield, reminding him and his family that "no one fights alone."

I'm here to tell you that I know Stacy has hard days. We all do. Those that have sick children face even bigger battles.

There are days that I wish I didn't even have to get out of bed. But all moms have to get out of bed. There are little people that rely on us, no matter if I would rather pull the covers up to my chin and pray for brighter days.

But Stacy sets a great example and an inspiration for us all. She reminds me that not only should we all put our feet on the floor in the morning, but that we should do it with a smile. Life is hard, there's no question about it. Sometimes, we just don't get that miracle that we pray so hard for. But we're lucky to be surrounded by some pretty amazing people.

And we'll always be "Keeping the Faith" on our Grace-Filled Journey.

Inspiration Comes In All Shapes And Sizes

Inspiration certainly comes in all shapes and sizes, and sometimes it's the smallest packages that make the biggest impact.


When I decided to write this year's columns on people who inspire me, this young lady was the first person on my list. She has a heart of gold, and kindness and compassion that will certainly change the world.

I met Kamryn Kiper many years ago as her babysitter. In my junior high and high school days, I babysat for her older siblings, Kaylyn and Kyle. Since I was away at college when Kamryn was little, I only had a few chances to babysit for her, but I've known her family for as long as I can remember.


Shortly after Grace was diagnosed with INAD, Kamryn came up to the newspaper office one paper night with her grandpa (Ron Deabenderfer), when he still made obituary and fire calls for us.
She shyly walked back to my desk with an envelope full of money, that she had collected at one of her brother's sporting events. Kamryn made a bunch of the rubber band bracelets and accepted donations for INAD research. Although Kamryn is now 13-years-old and a seventh grader, she was just in fifth grade when she and two friends (Maddi and Layne Ruppert) started this endeavor.
That first night, she brought in over $100 for research at Washington University in St. Louis, MO, as well as special ones just for Grace.

Throughout that year, Kamryn would stop by the paper on Sunday nights, either with her grandpa or her older sister, and bring an envelope back by my desk with the money she had raised. One day, she had two envelopes, one with money for research and another with money for something we could use to meet Grace's needs.


Kamryn had tables of her gracelets in front of her house at Old Settlers and at the first Grace Race, and even made her own business cards. She ended up raising more than $1,000 for INAD research through her project.

And we were so blown away. Not just by the amount she raised, but by the spirit in which she gave it.
It would have been easy for a ten-year-old to sell bracelets and keep that money for the latest toys or technology gadgets. Her $1,000 would have gone a long way to something she could have used for herself.

But Kamryn saw a bigger picture, and felt like there was something she could do that would help Grace. And she did it in a big way.

Her thoughtfulness remains such an inspiration to me, because it comes from a sheer love of others. If the world we live in had a few more Kamryn Kipers, we'd be unstoppable.

mlh

So You're Telling Us There's A Chance

There's a scene in the movie "Dumb and Dumber" where Jim Carey's character asking Lauren Holly's character what the realistic chances are that a guy like him ends up with a girl like her. After some hemming and hawing, Mary Swanson (Holly's character) gives Lloyd Christmas (Carey's character) the devastating news. 

"Not good." Mary says.

The heartbroken Lloyd asks how not good. "You mean, not good like one out of a hundred?"

Again devastation. "I'd say more like one out of a million."

After a long pause, a smile breaks out across Lloyd's face. "So you're telling me there's a chance. YEAH!"

You're probably wondering what this has to do with INAD and our journey. Great question.

A couple of months ago, I was Googling "infantile neuroaxonal dystrophy" to see if there were any stories out there about INAD. Most of them I had seen, but one caught my attention. It was a GlobeNewswire press release from a drug company called Retrotope. The headline read "US FDA Grants Orphan Drug Designation for Retrotope’s RT001 in the Treatment of Phospholipase 2G6 (PLA2G6)-Associated Neurodegeneration."

I didn't exactly understand what that meant because I speak English, not science. Basically though, what the press release said is that this company was granted orphan drug status for a drug aimed at treating INAD and the gene that causes it (the PLA2G6 gene mentioned in the headline). There was a lot of other information in the release, which made me want to investigate further. 

What I found was that Retrotope had not only developed this drug, but was doing compassionate use trials with two children with INAD. The company reported that the drug had appeared to "have arrested progression" of the disease and had led to a "re-acquisition of lost development milestones" in one patient that had been using the drug since March 2017. This was in an announcement that a second patient would be added to the compassionate use study to see if the results could be repeated.

A lot of things went through Mary and I's heads when we read this. Disbelief, shock, surprise. Ok those are all one thing really, but we did have some other emotions. And we've had a lot more since then. Not long after we found out about the drug, we contacted Retrotope and encouraged other families to do so. We had a great conversation with the CEO of the company, the acting Chief Medical Officer and others involved with the study and the company, who is hoping to start clinical trials in the near future.

While we know that this drug isn't a cure for INAD (we feel that Dr. Kotzbauer's research into gene therapy at Washingon University has that potential), Retrotope was enthusiastic about the results that their drug produced. 

And we are enthusiastic too. We hope and pray that the drug can slow down INAD and give Grace some of her skills back someday, if she is fortunate enough to be involved in the clinical study. Even if Grace isn't part of the clinical study, we are still enthusiastic. This study means that things are happening in regards to curing and treating this awful disease. Even if it just slows down the symptoms, it will mean huge things for children who are diagnosed with INAD and maybe buy them precious time until we can find a cure.

We're not telling you that Grace is ok and that this drug, or something else, is going to cure her. But we are telling you… there's a chance.

krh