BY KARA AYIK

Dear Mother or Father Who Isn’t Brokering Your Own Treatment for Your Child,

I wanted to write this letter because I believe you might be feeling the same sort of guilt and despair that I felt when I saw other parents doing their own ground-breaking research while raising millions of dollars, creating teams of scientists and physicians and starting companies that would develop a miracle cure or treatment for their children. I wanted to tell you my personal story about how God spoke to my heart and changed my thinking in hopes that you, too, might see your own situation in a new light.

When my son was diagnosed with a rare and progressive multi-systemic genetic disease at age three, I was told that the treatment for his disease already existed. And though I was devastated to the very core, I found solace in the fact that he would soon be able to access a cure. But it turned out I was wrong. The treatment existed, but only in a lab.

In my naiveté, I was patiently hopeful until about year three or four when I realized that nothing was happening. Nothing. No progress, no movement. Clinical trials were canceled before they even started, and no one uttered a word about when they might restart. I realized that it would be years before any treatment would be available.

By then my son had already begun manifesting new symptoms of his disease, and every couple of years, something new would appear. Some were external changes that I could see, and some were internal that I couldn’t. My anxiety about his life began to ramp up, and I started some rather frantic Internet and database searches trying to learn all that I could to make sense of what was happening.

About five years after his diagnosis, I was poking around on the Internet during one of my obsessive searches when I saw a headline about my son’s ultra-rare disease in Nature magazine, one of the world’s top scientific journals. The headline announced a novel and exciting discovery about a promising drug treatment for my son’s disease in the form of a compound that could induce something called heat shock proteins, or HSPS, that would help his body overcome the underlying cause of disease.

For a short while, I was jubilant. I even communicated with the lead author of the Nature article. But months afterwards, the promising new drug discovery was diverted towards treating a completely different disease. We had been abandoned without a word or a backward glance, most likely because of our ultra-small population and the infamous therapy that was still struggling to gain a foothold in the process of funding clinical trials.

With my new hope dashed and almost no social and financial capital to speak of, I grew even more desperate, believing the only option was to figure out something on my own. These HSP inducers, as they were called, already existed in other herbal and pharmaceutical drugs. And even before the article came out, I had already heard about something called chaperone therapy, which works along the same lines as HSPs to treat the type of disease my son has.

Tossing all concerns about my ego aside, I reached out to researchers and physicians and asked questions about chaperone therapies and HSP inducers, some that revealed my ignorance and others that reflected my insight and understanding.  In response, some ignored me, some sympathized, some scoffed, some condescended, some offered suggestions, and one physician was willing to move forward with a possible off-the-label option.

Looking at my son, who appeared to be becoming increasingly frail compared to other children but who was still stable and with a good quality of life, I weighed it all out. I weighed out what might be dangerous for his compromised liver and blood and what might be safe enough to try and help him. In the end, I decided I had to let all the possibilities go, except for a few ordinary vitamin and mineral supplements. I could not risk any harm to my own son.

At this point, I hit another low. Why couldn’t I manage to do what other parents were accomplishing? Didn’t I love my son well enough to carry out the miracle-making process on my own? Why was I not smart enough to find answers that were laid out in plain view for biochemists? Had I made all the wrong decisions about relationships and finances?  Was I not trying hard enough?

I began to ask God, why? Why can’t I fix this?  It all seemed unfair, and I felt like a failure. The torment went on for some time, flaring whenever my son experienced problems related to his disease.

With all the noise, my busy mind was never truly quiet.

Well, almost never.

Because one ordinary day, completely out of the blue, God found a small space of quiet in my mind, and in that moment, God spoke to me quite clearly.

Now some claim to hear God’s voice audibly, but for many others, including me, God’s voice comes in a revelation of knowledge in the form of an impression. The impression is so clear and definitive that there is no room for doubt about its origins and accuracy.

The answer that came in, answered my question, why can’t I make a treatment happen for my son? Translated into my own words, here is what God spoke to me:

Kara, you weren’t asked to do that. I didn’t lay that desire on your heart. I didn’t orchestrate the relationships and provide the resources you would need to accomplish that. I have something else in mind for you.

And that was it. But it set me free and allowed me to begin the process of reframing my life, my gifts, and my purpose.

After the epiphany, I started thinking about what life would be like if we were all destined to be scientists or physicians. I thought about the songs that uplifted me when I was down and the people who sang them. What would life be like without the work of artists and musicians? Without teachers and caregivers? Of course, we need people who are gifted in the sciences and who have the business acumen needed to help bring drugs and other therapies to market. But life is more than just existing; there also needs to be a quality of life that makes it beautiful and worth living, a life in which we can live out our unique purpose alongside other human beings, whose purposes are no greater or worthier than those of any others.

Ultimately, I found freedom from my guilt and despair and walked together with my son in endurance for the remainder of the time it took to access treatment, in total, eighteen years. Though I continued and still continue to experience the ebb and flow of grief over my son’s disease, I would never again be crushed by the weight of what I once saw as my own failure to be the parent who brokered her own child’s cure.

So, my message to you, if you are feeling like I did, to open the door to the possibilities that in the right timing, you too might see clearly a path set out before you, one that may directly or indirectly involve you in the process of brokering a cure, and one that may simply be to take care of your child. You will find your way. Neither your life nor your child’s life is without purpose, and you are both created perfectly to achieve it.