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Patient voice

Making peace with numbers

By Kara Ayik

I vividly recall one morning when I was just five years old and struggling to solve my first-grade subtraction problems. All of my classmates were leaving for recess, having finished the problems and been rewarded with an owl stamp at the top of their workbook page for being number-wise. But twice the teacher just looked at my worksheet, shook her head, and sent me back to correct my errors. A quiet child, I didn’t say one word; I was discouraged watching everyone leave, but I just kept counting. On the third try, my page then a mess with erasures and wrinkles, the teacher took pity on me and stamped an owl at the top of the page and sent me on to recess. It was a semi-hollow victory.

Numbers, I celebrate you! Data scientists, you are my new heroes! Kara Ayik discusses the important role numbers play in rare disease
Kara and her son Evren

The day marked an inauspicious beginning to my complicated relationship with numbers, which was a hostile one for most all of my life. Fast forward nearly 44 years. I have made peace with numbers. Today, I respect and find beauty in them. I see them as life-giving. But the process of making peace with numbers was not a quick and easy one. Much of this transformation is a result of having a child with a rare disease.

After the first grade, things didn’t improve much between numbers and me. From junior high through high school, I spent endless hours agonising over math problems at our kitchen table with my father, a former military officer turned high-school math teacher following retirement from the Air Force. The tutoring sessions often involved tears; I simply had no aptitude for math. Math was my enemy.

In college, I had to take one math course to meet the fearsome “Q” or quantitative requirement. Knowing this return to math class would entail a certain degree of misery, I came up with the brilliant idea of taking an accelerated six-week summer school course to hasten the duration of the pain. The statistics course was team-taught by two PhD candidates. The first professor, an aspiring psychologist, was your quintessential Santa Cruz, California hippie. A soft-spoken, mellow man with long curly brown hair and a long brown beard, he would embed the math problems into complex and wordy narratives. His co-pilot for the course, a balding middle-aged man with a little hair over the ears, was his polar opposite. A certified public accountant who had a cut and dry relationship with numbers, he wore heavy, black-rimmed glasses, and—I kid you not—a pocket protector. He would give rapid fire lectures with straightforward problem sets, no words involved, and he never smiled. The end result of this disastrous combination of professors and my modest aptitude for the subject… well, I failed the course. It was the first time I had ever received an F.

Then in my master’s program, I took a course on basic research methodology and statistics. I didn’t much like the class, and I bristled when the professor claimed that doing statistics problems was “as easy as balancing a checkbook”. She ended up giving me a mercy grade of B-. But little did I know that the understanding I gained about research design and statistics would be immensely helpful when one day I would have a rare child. 

Numbers, I celebrate you! Data scientists, you are my new heroes! Kara Ayik discusses the important role numbers play in rare disease
Evrin and Erol

When my son was born, my life’s greatest wish was granted. My heart was full. In him, I had what I wanted most in life. But when he was two, upon discovery of an enlarged liver and spleen, our paediatrician began sending us for liver function tests. Each time the tests came back, the doctor would call and tell me the numbers were still high. Damn numbers. You are the bane of my existence. A little over a year later, I had in hand the results of a lab report. The report showed zero acid sphingomyelinase activity. My son had Niemann-Pick types A and B, now called ASMD. I can still see the lab report in my mind’s eye. Another sinister number. 

My icy relationship with numbers continued unimproved for more than a decade until I was assigned to teach an interdisciplinary course called Core. As a first-year composition teacher, I had a degree of competency teaching grammar and thesis development. But being told I would have to teach two essays that revolved around math equations nearly paralysed me with anxiety. I was suddenly standing on some train tracks with a locomotive headed toward me at full speed. 

But something happened during that course (which I muddled through) that finally cracked the ice between numbers and me. A then-professor of applied mathematics named Juan Meza presented an enthusiastic lecture entitled, “How mathematics can save the world!” It was upon hearing this lecture about using mathematical modelling to solve real-world problems that I had an epiphany about the true potential of numbers and data science to open doors for the rare disease community. I began noticing more articles in the media about how mathematical modelling could be used to extract life-saving information for individuals with rare diseases. With this epiphany, supported by the understanding I had gained from my basic courses in research design and statistics, I could see how data scientists could circumvent the pitfalls of having a tiny patient population with which it ordinarily would be impossible to establish statistical significance needed to demonstrate meaningful progress. I realised that numbers were soldiers on our side of the battle, not the enemy. 

Numbers, I celebrate you! Data scientists, you are my new heroes! Kara Ayik discusses the important role numbers play in rare disease

I read with interest the progress reports from clinical trials for olipudase alfa, a promising treatment for ASMD. My excitement about the potential of numbers and data science continued to build. Family support organisations could gather, analyse and present their own data in the quest for their own treatments and cures. I witnessed the unfolding of hope when learning of possibilities such as using the data from the medical records of precious children with rare diseases who were now in heaven as control arms for studies, possibly eliminating the need for the dreaded placebos. Data could be gathered from rare sibling pairs, and platform trials could be designed so that multiple possible therapies could be tested at once. And innovations aside, it is the data that primarily allows life-enhancing and life-preserving testing and medications to be approved by regulatory agencies across the world. 

Numbers, I celebrate you! Data scientists, you are my new heroes!

Today, as I write this tale, my son Evren is seated at my parents’ kitchen table alongside Grandpa, who at 75 is coaching him for a final exam in his college math class. Watching Evren suffer a bit brings back some old memories, but he will survive just as I did. And my younger son Erol will soon be attending UC Berkeley, majoring in Applied Math and Data Science. (Whether or not Erol chooses to continue that major or seek a career in data analysis in the rare disease world I leave entirely up to him.) 

And in closing, a little counting poem from the great poet Rumi, translation by Nader Khalili, that sums up a little of my life’s philosophy about how to navigate my own life journey:

I keep counting

The leaves of the garden

I keep counting the cry

Of the partridge and the crow

They can’t be counted

I know

But I keep on counting

It helps the counter to grow


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