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Ayik Family Journey

Evren and Kara Ayik – Evren is a recent high school graduate who lives in Merced, California, and who has ASMD. He plans to start Fresno State University this fall to become a special education teacher. His mother Kara likes to encourage him to stretch his wings and play an active role in making the world a better place to be. They share a love of animals and nature.

December 2020


By Evren Ayik

Merry Christmas, Everyone!

My family and I made to it Christmas 2020. I finished my first semester in college successfully, and now I am officially on break. My final requirements included a speech on Hanukkah (Happy Hanukkah, by the way), and also a report on a virtual viewing of Dvorak’s New World Symphony. I am so relieved it is over. I have lost count of how many times I have said that.

To date, the month of December has been pretty uneventful, although it’s fun to think about gifts and enjoy decorations and surprises. I look forward to eating some of my mom’s sugar cookies soon, and I actually received my biggest Christmas present early—a TV! It was supposed to be for my dorm room, but because college dorms are still not open, I have it in my room at home (much to my mother’s displeasure—she thinks one TV in the house is enough, and that I already spend enough time on the screen as it is). I also find it amusing to see where my elves, Garnet and Tony, are hiding.

Our cat, Pearl, who apparently wanted to re-enact her latest escapade of chasing our neighbor’s affectionate and docile cat, Cuddle Cakes, up a tree, thought it might be fun to scale our Christmas tree in the middle of the night. Needless to say, that was not a very good idea, especially since she is not exactly a slim cat. She knocked it completely over, which resulted in some broken ornaments, including poor Captain Jack Sparrow, who lost an arm, and Dorrie (from Finding Nemo fame) who lost one of her fins. A few others, including my mother’s preferred chocolate covered strawberry and cherry pie ornaments, were broken beyond repair. But my mom says that the silver lining is that the ornament I made her when I was very little survived, and she has discovered that Gorilla Glue is excellent for things like gluing Captain Jack Sparrow’s arm back on.

As for my mom, she is busy finishing school too, but is almost done. Being someone who cares deeply about nature, animals, clean air and water, she is optimistic that next year holds promise for greater protections of the Earth and its living creatures, including us human beings. Along with everyone else, she is waiting in great hope for the COVID vaccine and the end of quarantines, isolation, and illness due to the virus.

My hope is that we can meet in person for the 2021 Niemann Pick Conference! And you? What are your hopes for 2021?

Here’s wishing that at least a few of your dreams come true in 2021! In the meantime, have a Merry Christmas, a joyful holiday season, and a very happy New Year’s!


November 2020

Livin’ Life

By Evren Ayik

October has been a long month. I guess that’s because there are really no holidays or breaks from school. This past month I have been rather busy. I continue to work hard in each of my online classes at Fresno State. Currently, my least favorite class is communications because I am not a big fan of the professor. My favorite class is a writing tutoring class. I enjoy this one-unit class quite a lot because my small writing group has a charismatic vibe, and I am able to learn new writing techniques.

Some things that I have been doing for fun include going on drives to practice driving on different roads and watching a lot of football. I have begun to make picks of the teams that I think are going to win. My favorite team is the Denver Broncos. We are not very good this year, but I am a die-hard fan, so I support them no matter what situation my team is in. Something interesting about the Broncos is one of their wide receivers, KJ Hamler, is an Uplifting Athlete. Uplifting Athletes use the power of sports to uplift people with rare diseases. *BREAKING NEWS: KJ Hamler caught the winning touchdown pass in today’s game! Yeeessss!**

Recently the Mountain West College football conference decided to play an eight-game season. My college, Fresno State, is in the Mountain West Conference, so I have had fun watching them play on TV. Fresno State didn’t get off to the best start, but they bounced back in week two. One of the starting defensive ends on the Fresno State football team went to my high school, so that is really neat to be able to know someone on the team.

I have also been involved in a college group here in my local community. We are currently building a Toy Story-themed little library for the community. The little libraries, if you haven’t seen them, are usually build like miniature houses (or barns) with little doors that open to reveal free books that people have donated. People can take books or leave them. The little libraries are attached to posts and set up around town. I also participated in the setting up and tearing down of a movie night for children. That was a ton of work, but we were rewarded with a burrito from the nearby taco shop and abundant candy for our efforts.

On Halloween, I went to Pinnacles National Park during the day and a party with my “pod” friends in the evening. It’s on my bucket list to visit every National Park in the United States, and Pinnacles was one that was decently close that I have never been to. The Halloween party was fun. I dressed up as a pirate and ate even more candy.

October was a very busy, long month, and I am looking forward to November because of Thanksgiving and Thanksgiving break. Personally, I love a roast turkey most of all. Finally, as a postscript to my mom’s last posting about Skittles, shortly after publication, he learned to love cat treats. Now he has his own little treat bowl right next to Pearl’s. Happy Thanksgiving, everyone!!


October 2020

Skittles’ Lesson

By Evren and Kara Ayik

Evren’s schedule is booked solid with online studies and assignments, so he is taking a break as my co-author for this month. Even though Skittles is officially Evren’s cat, this month he taught me a good lesson, and I wanted to share it.

We had only owned dogs up until a few short years back. In a moment of weakness at PetSmart, I deliberately wandered over to the adopt-a-rescue-cat window, and I saw a cat on sale. Yes, this cat was actually on clearance! I guess he had been around for a while, so the store had reduced his usual adoption fee by a third. Always one for a bargain, I took a closer look at clearance cat and saw that he was striking. His shiny, thick fur was smoke gray and snow white, his peridot eyes were large and round. He sported long, elegant whiskers and a delicately sculpted light pink nose. He had a large, shapely head and a remarkably long neck. This cat was regal! Hmmm. . . whom do I know who needs an adult cat? I asked myself. And instantly a relative (who’d recently divorced) came to mind. Long story short, I arranged a match between my relative and the cat, and we took the clearance cat to the check-out stand for adoption.

The relationship between the adopted cat, Skittles, and my relative lasted for a couple of years, but then a new marriage was announced, and my relative’s significant other declared that the house would be a cat-free zone. So, in the end, Skittles came back to live at our house with the following advisory from his former owner: “No belly rubs, and he doesn’t like cat treats.” Upon his arrival, I quickly learned that Skittles was petrified of our extra-large Golden Retriever, Valentine, nicknamed Tiney. “Skittles is just going to have to adapt,” I told the boys. At bedtime that first night, I picked up Skittles to carry him across the hall and into Evren’s room for the night. Skittles was to be Evren’s very own cat, and Evren’s bedroom would be his safe zone where no dog would threaten his peace. As I gingerly carried Skittles past Tiney, Skittles abruptly came to the mistaken conclusion that I was about to feed him to the dog. Skittles’ ears went back, his body stiffened, he showed his teeth, and then he sank his two little cat fangs deep into my arm, desperately trying save his own life by escaping my hold. It was not the most endearing of moments. But eventually Skittles settled into a sort of uneasy co-existence with Tiney. His anxious ways, rejection of cat treats, and refusal to be cuddled left an impression that he was an unfriendly sort of cat.

Fast forward a year later, I decided Evren needed to raise a kitten that he could actually hold, since Skittles did not tolerate lap-sitting, let alone holding. I learned of a kitten on her way to a rescue whom we adopted and named Pearl. Much to our surprise, Skittles immediately became her most devoted caregiver. He would play gentle kitten games with her, groom her, and he always let her eat first from their shared bowl. He was tolerant when she tried to pounce on him. Much to Skittles’ dismay, Pearl had no qualms about cuddling up with Tiney for some companionship. One evening, Pearl, who enjoyed walking around the edges of the bathtub, fell into a tub full of water. Once I had pulled Pearl out, Skittles sprang into action. He followed two steps behind her for the rest of the night, refusing to let Pearl out his sight for even a second. Seriously? Can’t you people manage to take care of a kitten? he seemed to be asking, shaking his head and questioning our competency as kitten parents.

But in fact, Skittles did have his own way of showing affection. He head-butted our arms when we sat quietly on the couch. We learned that head butts are actually a cat’s way of expressing love for his or her owner, kind of like hugs. At bedtime he slept curled up near Evren and stayed all night until Evren arose from bed each morning. And after all, no one could deny that he was endlessly patient with the mischievous Pearl. Only love could let him do all that.

Just a few days ago Skittles woke me up late in the night, meowing incessantly with his odd little meow that had no “e” sound in it until I finally couldn’t stand it anymore. I dragged myself out of bed to open the patio door and let him in. I flipped on the porch light, and what did I see before my very eyes? A dead brown and white roof rat at Skittles’ feet. He brought it right up against the sliding door track. Skittles looked at it, then looked at me proudly and magnanimously. Skittles had presented me with a gift, and he was so very proud of himself. Although I felt like a killjoy, I didn’t let him bring it in.

As I thought about Skittles the next day, a thought came to me. Skittles must have the biggest heart of any cat I have ever met in my life. We collectively had branded this cat as aloof and grumpy, but all the evidence pointed towards a cat who is exceptionally loving, just in his own way. As I pondered this epiphany, I found myself wondering, how often have I labeled other human beings in the same way I labeled Skittles? When people didn’t show the behaviors I wanted them to in the time I expected them to, did I label them in some rejecting way? I hope I can retain this lesson that Skittles may have just been sent to teach me.

September 2020

College, Spike Ball, and TORCH Awards

By Evren and Kara Ayik

The month of August was eventful for us. I began my first day of college, but first we had the drive through welcome ceremony, Covid-19 style, at Fresno State University. That was memorable. Usually there is a tradition that new Fresno State “Bulldogs” (students) run through the doghouse (an inflatable one!) on the football field to initiate themselves into Fresno State. Instead, this year new students and their families drove onto campus and navigated through a welcome route. In theory it was a great idea, but it was quite a trial even getting onto campus. After all, there’s nothing like intense summer heat, short stop light cycles, and cars coming as far as the eye can see from every direction, to bring out the cheerful and courteous driver in all of us. What a traffic jam! But we finally made it on.

Music was playing loud enough to hear it from our cars, and a variety of campus folks all dressed in red and blue stood along the sides of the street cheering and waving to welcome us. Yes, the inflatable doghouse and the campus mascot, Victor E., was there too. My grandma told us to start snapping pictures of the sign they had posted—the kind that lights up with light bulbs to form letters and words like “Don’t text and drive.” As I started to snap the picture, the lights flickered, and in our picture, the sign ended up reading “Welcome New Stud” (instead of New Students). We all got a little laugh out of that. At the end of the route they handed us our Fresno State goodie bag through the car window (and you may know by now how much my mom and I do love SWAG!) I pulled a Fresno State mask out of the bag, which was terrific because I really wanted one. We ended the night with a drive-through dinner at Boston Market, because we don’t have one where we live. I love their macaroni and cheese. I guess that was the fun part of starting college, because as soon as school started, I was faced with hours of hard work. It’s a silver lining that I am at home where my grandpa, who is a math teacher, can help me along with my required math class. Teaching math using Common Core guidelines is no joke. Now I guess I am still adjusting to a very heavy workload and making my best efforts to complete all of my assignments.

Other than that, late August had two fantastic events in store. The first was winning a spike ball set in a raffle. It takes four people to play a game, so I may not be able to use it too often, but I was thrilled to have won such a great set. I am waiting for it to arrive in the mail. And the high point of August for me was the TORCH Award ceremony, which was pre-recorded but shown on a live broadcast through YouTube on August 27th. It was such a wonderful honor to receive the award, and the video produced by Sanofi Genzyme made us cry. We were so proud! If you’d like to see it, it is recorded and available to view on YouTube. You will catch a cameo appearance in the video of our wonderful NNPDF Board President, Justin Hopkin, and his very much-loved and adorable son, Garrett.

Here’s hoping for cooler weather and successful schoolwork in the month of September!

August 2020

Top Three Highlights of Summer 2020

By Evren and Kara Ayik

1. The 2020 NNPDF Conference was terrific. Before the conference started, we received our NNPDF goodie bags in the mail, which was great. Who doesn’t love SWAG?! I had to spend some time preparing to share my family journey, but in the end I think some viewers enjoyed it, so it was worth it. I also really enjoyed hearing the other family journeys, which were moving and inspiring. My brother met some of the NNPDF siblings for the first time, which was nice to see. But most of all it was wonderful to see all the adorable children and happy family photos on camera and on the photo “walls” on the conference website. My mom and I were totally surprised that we were so sad when the conference ended. We had no idea we would have the same let down feeling as the one we feel after an in-person conference has ended. All in all, we don’t believe the online conference could have been any better.

2. Thanks to my only aunt and uncle, who rented a bright yellow ten-person raft, I enjoyed a one-day rafting trip on the American River in Sacramento, California. The river this time of year is actually pretty calm, so I would have to say my trip was more of a lazy float with a few rapid-ettes. The day was nice, and then we saw ducks in the river and a mule deer grazing along the banks. It was refreshing to be in so much water since my hometown of Merced is quite dry, hot, and flat. We blasted other rafters with water guns, and they blasted us back. (Future raft renters: BYOWG- Bring Your Own Water Guns.) I removed some trash from the water to help the environment so as to leave no trace. Everything was pretty cool except for the moment when I unwrapped my pre-packed Subway sandwich, at which point I was horrified to discover it had mayonnaise on it. I don’t do mayonnaise, so I went hungry. When we returned to aunt and uncle’s home in Folsom, we ate ribs, corn-on-the-cob, and potatoes. Luckily there was no potato salad, as my uncle also does not do mayonnaise under any circumstance. Overall, a great day.

3. Thursday, July 24th was another great day. My neighbors surprised me with a very generous paycheck for housesitting. It was actually fun to take care of their cats, Thor and Odin (cleverly named by their Nordic-American human parents). Thor and Odin are just cool cats. That’s about all I can say about that. That same afternoon, a good friend from my youth group and I ate some great chicken strips from Five Star Burgers while socially-distancing at the outdoor picnic benches. Later in the evening, Odin and Thor’s human siblings, twin boys, came outside to play Frisbee in our cul-de-sac, which was a lot of fun. But the day still had one more surprise in store. As I drove with my brother to deposit my house-sitting money at the automatic teller, I had the great fortune of running into the owner of my dream car, the VW van! (I posted a picture of me in the outfitted orange bus on the NNPDF conference photo wall.) The owner of the van, a really nice guy who had bought it and converted it into a camper van so he could travel the West Coast, was leaving for San Diego that very night. Fortunately, he remembered me from our first meeting, and he let me take a few photos in the van, and then he took me for a spin around the parking lot.

So memory three, as you might have noticed, was nothing spectacular compared to a typical American family vacation memory. But that’s what 2020 has been all about—learning to fully embrace the joys and victories of our daily lives and to treasure them instead of labeling them as second rate or not quite what we had hoped for.

July 2020

Adopt-a-Senior Boxes

By Evren and Kara Ayik

Being a senior in high school in 2020 was different and disappointing because of Covid-19, but there were some special things that happened just for us. Across the country, people were doing random acts of kindness for seniors. One of the most popular events was the senior box adoption, which my family and I really enjoyed. The Facebook campaign was called “Adopt a Senior.” Someone from the community would choose a high school grad to create a gift basket for that contained mostly treats such as chips and candy, but also cards, gift cards, and other small surprises. Because I am the type of person who loves these kinds of treats and surprises, I was very pleased to be officially adopted twice. The first adoption was from a family friend who knew us for years, and she created a grad-themed basket, which was actually a plastic tub, with festive graduation decorations, Pringles, candy, mini-soda cans, and a gift card for one of my favorite places to eat, Five Guys.

The other adoption was also very special. In my junior year, I was interviewed by the local American Legion Post 83 as a candidate for Boy’s State, which is a week-long government and civics program for high school students from around the state that takes places in Sacramento, the state capital. I was ultimately chosen to go as the representative from my high school, and the week-long camp is one of my favorite memories of all times. Anyway – the Post heard about the campaign and decided to sponsor some of their Boys’ and Girls’ State representatives. So, they called my mom to find out what kinds of treats I liked. She told them about my favorite candy, Sour Patch and Hershey’s chocolate, and also about my love for certain Hostess products, Pringles, and my personal interest in meaningful keepsake items. (And yes, my mother absolutely hates it that I like Sour-Patch candy, which are terrible for my teeth. I have to hide it from her.) The day before graduation, two uniformed members of Post 83 came to my door with an American-flag themed shopping bag filled with tons of goodies that included a beautiful American Legion commemorative coin, a pen, and other memorabilia, and gift cards for Starbucks and Amazon. I was impressed that they managed to find an American-flag themed can of Pringles and also a beach ball, which is floating around the house somewhere at the moment. The bag’s handle even had a little graduation tassel key chain attached. It was a complete surprise! Receiving the wonderful bag created a terrific memory for me.

My family also adopted three graduating seniors with my grandparents choosing one of my closest friends, and my mother choosing two boys who had especially kind personalities. It was a lot of fun to put the baskets together with treats and little gifts such as a small set of tools for one boy, and a gift card for the other. One item in each basket was a bottle of pink sparkling apple juice, AKA “champagne.” We included a graduation card and a little painted rock with each boy’s name in their baskets.

While graduation was certainly not what I had expected this year, I am thankful for the surprises and the memories that the Adopt-a-Senior box event created in my timeline. I might also add that it was as much fun to make the baskets as it was to receive them. I hope our baskets made our adopted seniors feel as special as mine did for me.

Supporting one another. Supporting our community.