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Posted on 11. June 2010

Raised in Captivity

By Tammie Allegro

When you meet a 17-year-old who says he was raised in captivity, it gives you pause. You might even wonder what on earth the kid is talking about. However, when you learn that this particular young man has been sheltered and home-schooled since kindergarten due to his autoimmune disease, you begin to look at things differently.

Tyler Brolliar has primary immunodeficiency disease (PIDD) and eosinophilic esophagitis (EE). Currently, he can’t eat any foods. He depends on elemental amino acid-based formula, which he administers to himself through his feeding tube. He does have one luxury: Dum Dum suckers! (Apparently, they have no natural ingredients like fruit juice or extracts.) When I met Tyler, he was able to eat beef and pears, but he can no longer eat those because his body rejected them; his esophagus was beginning to close up. The process of clearing out his system takes a couple of months. But, that doesn’t stop Tyler from sitting with his family for dinner or going to friends’ houses to hang out and play video games. 

Tyler came into our lives as a friend of my oldest daughter. I first met him after a Halloween dance where he was dressed as Sweeney Todd. His remarks and his tone of voice were all in tribute to the movie. Unfortunately, I didn’t get the reference since I hadn’t seen the movie. That being said, there was something about this young man; I was captivated instantly. It wasn’t until the end of the night when we gave him a ride home that I learned how ill he is.  He mentioned his “infusion” scheduled for the next day and I asked, “What kind of infusion?” He was surprised that I knew what intravenous immune globulin (IVIG) is and that I genuinely wanted to know more about him. That’s when I knew I wanted our IG Living readers to get to know him as well.

Mature beyond his years, Tyler is bright, charming, funny, quick-witted and sweet. Most teens would run for the closest computer at the sight of their mother’s friends coming to visit. Not Tyler; he is right in there making the group laugh. His grace in front of us “older folks” is impressive. His conversations are not the typical self-centered commentary of a teen, but rather the wise words of a well-versed young man.

Home life for Tyler is pretty amazing. He comes from a very loving and supportive family. His mother and two sisters are there for him every step of the way. The lengths his mother has gone to for his treatment and care speaks volumes about the power of a mother’s love. 

Having a chronic illness can be overwhelming for anyone. The challenges are multiplied when they coincide with things like hormones, peer pressure and figuring out how you fit in socially. Tyler copes by setting goals for himself: He wants to be an artist and a writer. 

“I don’t relate to regular teenagers; they confuse me,” he says.  “I have never been taught how to draw, but I just do things over and over until I get them perfect. Then, I go back later and change them again.”

Eventually, Tyler would like to serve a mission for his church. “I would love to go somewhere international and exotic, but I will probably end up in Utah or Idaho,” he says.  Knowing the risks, it is his hope that he will be able to manage his health by the time this milestone rolls around. For now, he focuses on his art, writing and getting healthy enough to attend a charter high school in the fall. Wouldn’t it be great if we all handled life’s challenges with such optimism and grace?

How about you? Does Tyler’s story inspire you to pursue a more positive outlook? Do you know any teens with chronic illnesses who are “everyday heroes?”

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Comments (10) -

Diane
8:14 AM on Saturday, June 12, 2010

Tyler sound a lot like my own daughter.  She has missed most of her high school years due to chronic illnesses.  She aspires to be a doctor and will graduate from high school this week.  She was just recently diagnosed with CVID and just started her infusions.  So her doctors told her she will start to feel better soon.  It is a rough road for anyone with a chronic illness, but I think  teens have it much tougher.  They end up having a great deal of life's  experience way before they should.  So many plans and dreams have become postponed.  Other teens have no idea what they live through on a daily basis and how strong they must be to continue.  My hat is off to Tyler, my daughter, and others like them.  This is a rough road they travel, but they become very strong individuals because of it.

mary wegner
10:02 AM on Monday, June 14, 2010

Thank you all for sharing your stories, they are so inspirational.  Here at FFF we try to connect with our end users "the patient" and understand what they go through on a daily basis. This new blog is a great way for us to get a chance to connect and try to understand what our customers deal with and how we can help.

Best of health to all of you and best wishes to your families who stand by your side through your struggles.  

Mary

Thelma
2:51 PM on Monday, June 14, 2010

He sounds like a very very special young man and is fortunate to have the supportive family he has. We all need to be thankful for our children's health.

Lisa
2:52 PM on Monday, June 14, 2010

Amazing! His optimism and perseverance is absolutely incredible. What a better place this world would be if more of us had his outlook.

Lisa
2:53 PM on Monday, June 14, 2010

What a great kid, and I'm awed by how well he and his family are handling a difficult challenge. Thanks for the article.

Sheryl
11:43 PM on Tuesday, June 15, 2010

I am awe struck that such a relatively young man has such strength! His parents are due many kudos for doing such a wonderful job! Being an adult with this illness is one thing..........I don't know if I could handle it as well...if it were my child!

norma
10:39 PM on Wednesday, June 16, 2010

well im so sorry to hears about ur son but yes i do understand how it feel to have son or daughter sick and alway being sick wit so much more Illness cause my daughter is alway sick she has the same thing as ur son omg i didnt think no one would be the same as she is but as u can ever think she is a troop alway fight out her sickness and thinking it ok to feel sick but i know deep in side she is upset cause she have a attuide at time and days but i guess she know im so sad so she try to keep her head about so i dont know she is 19 years old and about to fisih high school this year hopefully let see what life will be going after i really dont know cause she dont know what she really want she is so confuse wow..i guess i understand it cause she still feeling so sick...

Alejandria Kate
10:00 PM on Thursday, June 17, 2010

I loved this story! I was captivated by the read. I am extremely impressed with Tyler. What an incredible young man to have such character and strength. It really puts my own "problems" in clearer focus. I wish Tyler all his dreams to come true, and I wish I could see his artwork! Thank you for sharing. The writer's words really touched me. Great piece!

Eosinophilic Esophagitis
8:09 AM on Sunday, April 22, 2012

Eosinophilic Esophagitis Resource is a free online community where you can learn about eosinophilic disorders, ask questions, and share your experiences.

Phyllis Galante
5:28 PM on Monday, December 17, 2012

Keep up the Great work and attatude    Tylor, you are remarkable.   I am so proud of you    I am old enough to be your grandmother, I have been reciving gamma guard infusions every 4 weeks for almost 3 years.   They have helped me, but I stll get sick at times and I get tired very easily   but like you I push on   nice to know you   Phyllis

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