Gary Horton | Embrace Joy Where You Find It

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Our news has been bleak. Santa Clarita has suffered tragedy like none other here, before. And also fires. And, a continual run of traffic deaths… The news has been sad and bleak.

There’s no panacea for any of this. Community pain and reflection — and recommitment and determination — will take its time, and take its course.

It’s important that we not give up hope with all this around us. We should seek out and promote and even celebrate the good that yet abounds, even if presently joy is shadowed by this very real pain.

Today I want to share a joyful and remarkable American story impacting more than 30,000 individuals and all their family and friends. This is a story of immense tribulation, finally overcome, of truncated lives and fatal disease, finally breaking free to the joy of hope and normalcy and full lives, finally achieved.

I first met Kristina de Bree at a dinner where I was to meet her parents. Kristina sat between them, with a glass of white wine in front of her. I thought that odd for a 16-year old to have wine – only to find out later in the conversation Kristina was 30, not 16, and the reason for her petite size was her lifelong battle against cystic fibrosis.

Cystic fibrosis is a genetic disorder that affects mostly the lungs but also the liver, pancreas, kidneys and other organs. Effects include difficulty breathing, lung infections, intestinal problems, poor growth – and dramatically shortened lifespan. Many “CF” patients die before adulthood. Almost all die before 40 – even with frequent, invasive, incredibly expensive treatments.

Kristina experienced severe symptoms early on. Frequent hospital stays. She became diabetic. Soon, there were transfusions, lung treatments, constant antibiotics. And more near-misses with death than Kristina says she can count.

Life for Kristina became literally tentative. Of unknown duration. Temporary.

Still, Kristina somehow found the will inside, and with the motivation of her parents and close CF friends, she powered on. She excelled at school. Became a spokesperson for the Cystic Fibrosis Foundation. Made educational videos to help other CF sufferers cope, manage their treatments and keep their spirits up.

As a young adult, Kristina earned her bachelor’s degree at CSUN, and then, between hospital stays, continued with a masters in psychology from Pepperdine. To top things off, Kristina became a licensed marriage and family therapist with a private practice in Valencia. She specializes in treatment of trauma-related disorders, assisting women and children subject to domestic trauma and veterans returning with post-traumatic stress disorder.

Through all this she’s held her battle with cystic fibrosis to a begrudged stalemate. A bad cold, the flu, internal organ failure, could take her on any day. CF takes even the most spirited, most determined patients – and usually in what would be the prime of their life. By 30, most of Kristina’s CF friends had died in their 20s. Even with all the advances, Kristina knew that her time was next, and time was short.

I don’t know how Kristina mustered the courage to keep on and push on. There are few people with her spirit and even pig-headedness not to quit. She’d take on any insurance company, any hospital, any doctor or nurse to get the treatments to keep her going.

Kristina made her way into a drug trial in 2015 that gave her a good boost. Things were looking up, but then, the FDA pulled the test and Kristina quickly regressed. She lost 50% of her lung function in a few short months. “My best friend died when the drug test ended, and I thought I was for next, for sure.”

During this period Kristina met Brian Child. They dated. He helped her through these travails. He proposed. She accepted. Yet, as her wedding day neared, she became sicker and sicker and her own family doubted she’d live to see her own wedding day.

They say it often seems darkest right before the dawn…

In February 2019, at perhaps her lowest point ever, Kristina joined a special trial for a genetic treatment drug called, “TriKafta” – a brand-new, triple-drug CF therapy. Of her outcome Kristina said, “In just 24 hours my life amazingly flipped 180 degrees!”

Kristina turned 33 in March 2019. She married Brian at the Piru Mansion on April 5. From the glow on Kristina’s face I knew something special was afoot. Kristina laughs when she tells the story about how shocked wedding guests were when they witnessed her bounding up and down the four floors of the Piru Mansion when previously she struggled up a few short steps…

After the wedding Kristina took a “50k hike challenge” with Brian. In one week they covered 50 kilometers together, with Kristina often outpacing Brian… Any such thing was fully unthinkable before.

The FDA has now fast-track approved TriKafta for the larger CF patient base. Tens of thousands of CF patients will also now be hiking. Tens of thousands will also be able to marry. They too, will live to achieve their dreams and live to help others.

Kristina de Bree is careful to explain she’s not technically, “cured.” She’s treated, improved, and stable. Her life, is life anew. She hasn’t been hospitalized since taking the drug. “My disease,” she says, “is 10% of what it used to be.” Today, Kristina plans on living a very long time, working in her practice to help others.

This drug was developed in America. Science, (along with her determination) has saved Kristina de Bree. Science, researched here, has just dramatically improved the lives of tens of thousands of CF patients around us.

There’s still much in the balance for Kristina, this drug, and all CF patients. But for now, there’s incredible joy we can share for this renewed life hope for so many.

And especially right now, where there’s joy today it does us good to embrace it.

Gary Horton’s “Full Speed to Port!” has appeared in The Signal since 2006. The opinions expressed in his column do not necessarily reflect the opinions of The Signal or its editorial board.

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