Hello readers, Miggy here. Today’s spotlight is an extra special and extra tender one as this is the very first posthumous spotlight I’ve ever done. I am so thankful to Jenni for reaching out and wanting to share her beautiful Celia’s story. If you’ve been reading the spotlight for a while you’ll know that there are so many different kinds of special needs out there, and while it is rare, yes there are even children who die as a direct result of a rare genetic disease. (I specify genetic here, because there are children who die from illness and sickness too–also diseases. While no less tragic, I just want to point out the difference.) Please take the time to read Celia’s story. It’s heartbreaking yes, but poignant and full of beauty too.   

Andy and I met as preschoolers, more than thirty years ago. We dated in high school and were married shortly after college. We’ve lived in central Ohio since then, where Andy has worked with the trauma team at a large downtown hospital while I taught fifth grade for a number of years before Celia was born in 2007. These days we stay busy keeping up with Celia’s younger brothers, Tucker, age four, and Tolliver, one.

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Miggy: Jenni this will be my first posthumous spotlight. I am so honored to be interviewing you and talking about your sweet Celia. Let’s start at the beginning. As Celia was born seemingly healthy, do you remember those first red flags that something wasn’t right? How long did it take to get a diagnosis?  Can you take us back to that difficult

Jenni: Celia was our first child. Had she not been, it’s conceivable that we’d have noticed symptoms sooner, but she was well beyond her first birthday before we worried.  In hindsight, a few of the things we thought were part of her personality may have been signs – sometimes she tilted her head to look at things, for example, and instead of wondering whether her vision was impaired, we affectionately called her “Sideways Celia.”

When she was about 15 months old, we felt uneasy–she had a good vocabulary for that age, but as she started to walk, she stopped talking.  That might be dismissed as normal development, but she never recovered her words. And she never learned to walk well. By her 18 month well-visit, we expressed concerns to her pediatrician and were persistent enough to get a referral for a developmental evaluation. Celia underwent an MRI and although the developmental specialists spent an entire day evaluating her, the results of the MRI gave them clear information – Celia’s brain was dying. We were referred to a neurologist, who sent for test after test at lab after lab. The neurologist actually called it a “fishing expedition.” Finally, the results for the last test the doctor could think to try came back, shortly before Celia’s second birthday.  She had the infantile version of Neuronal Ceroid Lipofuscinosis, commonly known (although it’s actually NOT commonly known) as Batten Disease.
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Hi friends, we’re the Azimis–Mohammad, Anna, and Zayn. Mohammad and I met on our first day of college at Arizona State, and were married exactly one week after we graduated. Shortly after we moved to Berkeley, California to attend graduate school, and a few years after that we added Zayn to the mix. At birth Zayn was diagnosed with Achondroplasia–the most common form of dwarfism. (You can read some common facts here.) The most obvious features are a large head, short limbs, and stunted growth–usually no taller than 4′ 4”. Dwarfs have normal mental capacity, normal life expectancy, and lead pretty typical lives free of most interventions. We’re excited Miggy invited us here today to share our story with you. We think Zayn’s the coolest dude around, and we hope you’ll think so too!

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Miggy: Can you take me back to the day you found out Zayn was going to have dwarfism? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Anna: Zayn’s diagnosis was a complete shock to us. About an hour after birth we were told that Zayn showed signs of dwarfism. We would not officially know for a few days after that, and I held on to the hope that Zayn was “normal” for quite some time. For as long as I can remember I had my perfect life planned out–graduate, marry, have babies. Babies without disabilities. Babies without dwarfism. Zayn’s diagnosis numbed me. I could not understand how this could have happened to me. I was angry, I was sad, and I was scared. And I felt guilty for even having these emotions to begin with. But with time I soon realized my perfect life was still there–hidden in Zayn’s beautiful long eyelashes, hidden in the cutest chubby hands I’ve ever seen, and hidden in the the sweet newborn smell that only a perfect baby could produce. My perfect life was staring right at me all along, it just took me some time to see it.

Today, 17 months later, and Zayn’s diagnosis rarely bothers me. I still think about it every single day, but not in a way that I once did – I don’t feel sorry for myself. I love Zayn more than I could have ever imagined and the only thing that saddens me now is remembering back to the first few months of Zayn’s life. What should have been one of the happiest times of my life will always be remembered with such deep sadness and pain. I know I needed that time to grieve, but I wish I could have told myself then that everything was going to be just fine–maybe even better.
 
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