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My Journey with Seth
My name is Leif and I’d like to tell you about my favorite person in the world, my brother Seth. Seth and I are fraternal twins and we began our journey together in the outside world on April 17, 2012. Though I was born two minutes earlier, Seth was heavier, and at 6 lbs., 4 oz., weighed 4 oz. more than me.
Seth is a beautiful human being inside and out. With blond, curly hair and bright blue eyes, Mom and Dad sometimes say that he looks like a real surfer dude. He is a happy, kind, gentle spirit and is someone I can always count on for a giggle or a hug when I feel sad.
Seth is also a wonderful friend and companion. He has a great sense of humor and can always make me laugh, especially when he tells me jokes in our own special language that Mom and Dad can’t understand. Our favorite pastimes include chasing squirrels, watching birds, eating dirt and tomatoes from our garden, going for runs and bike rides with Mom and Dad, stacking blocks, taking things out of the kitchen cupboards and blowing bubbles at bath time. We also love dancing, and while I love to tap, Seth is more partial to whirling like a Dervish, spinning round and round in time to music composed by our favorites – Bach, Mozart and Raffi.
Seth started crawling a couple of months before me and it inspired me to get moving. I started walking just after our first birthday, but Seth took two months longer. Even after he had been walking for a while, we noticed that he was unsteady and fell over quite a lot. This seemed to make Seth really sad, and though I tried to cheer him up by sharing my sippy cup or soother with him, it didn’t always work.
At about the same time, Mom and Dad started to notice a few other things about Seth that caused them to worry. Seth’s growth had slowed down significantly compared to mine. He was also very thirsty, and Mom told people that he was sometimes inconsolable at bedtime. I didn’t exactly understand what that meant, but I remember that sometimes it was hard for me to get to sleep at night because Seth was crying so much.
When Seth went to see an endocrinologist, she said that there might be something wrong with his bones. When she used words like “rickets” and “failure to thrive,” I noticed that mom and dad looked really scared and I couldn’t help but feel the same. What would follow was a whirlwind of appointments and blood tests. Though Seth was getting lots of special attention and cool, colorful Band-Aids on his arm, I knew that he wasn’t really having all that much fun.
On October 21, just after Seth and I turned 18 months old, we got a phone call. Dad left the room to talk. When he came back, he had tears in his eyes and hugged all of us close together. That was when our family found out that Seth has a condition called cystinosis.
Though I don’t have cystinosis, it has become a big part of my life, of our lives. We spend quite a lot of time at the Alberta Children’s Hospital with nice people like Seth’s nephrologist, Dr. Midgely. He is one of my favorites not only because he is a twin, but also because he is funny and treats all of us with kindness and compassion.
Seth has to take five kinds of medicine every six hours day and night for the rest of his life and Mom and Dad say that sometimes they feel like pharmacists in training. I often hear Mom and Dad sneaking into our room late at night to give Seth his medication, and I say a special prayer that it doesn’t make his tummy hurt and that it will help keep him healthy and strong.
Cystinosis is a scary condition. Though Mom tries to hide it, she sometimes cries when she hugs us and I can tell that Dad is trying extra hard to be strong. It isn’t easy, but we are so thankful that Seth is doing well right now. He is so brave and takes his medicine without even the tiniest complaint. He is growing well, laughing, playing and just really loving life. I have heard Mom and Dad talking about how uncertain the future sometimes feels, and how we have to focus on the present and be grateful for each moment that we have together. I have to agree, and like to think of our time with Seth as a very precious gift.
One meaning of the name Seth is “to plant or sow.” I think that this is a perfect name for my brother, because he plants seeds of goodness, touching people with his joyous, gentle nature wherever he goes. Seth is my best friend and I want him to live a long, happy, healthy life. I want our journey together to be long and full of adventures like camping, fishing, hiking, skiing and traveling. I want to explore the world with Seth by my side.
When Seth falls down, I can help him get back up, but I know that I can’t protect him from cystinosis all on my own. It takes a village, and I am so grateful for all of the wonderful people who are helping him and helping us to face our new reality. We are sharing this journey with compassionate doctors, nurses, pharmacists and loving family and friends.
A few words from my parents:
We have been inspired by the amazing people in the cystinosis community and the incredible steps that the Stack family and the Cystinosis Research Foundation have made toward supporting this community and finding better treatment and a cure for cystinosis. Though none of us wish to have cystinosis in our lives, we are moved by the strength and hope that surrounds us and are proud to be bound together in our quest for a cure.