Community Corner

Hamden Teen 'On a Mission'

This Sunday Dylan Sporbert will join together with countless others who suffer from arthritis at the East Haven Arthritis Walk.

 

This Sunday, area reaidents will get moving at the  at East Haven High School, beginning at 9 a.m.

Though it’s largely perceived as an old person’s disease, arthritis affects approximately 50 million adults of all age ranges and 300,000 children, and it is the nation’s leading cause of disability.

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This year, one of those participating in the walk is Dylan Sporbert, a Hamden resident who was diagnosed with arthritis before he was 3 years old. He suffers from a rare condition called CACP syndrome.

Now, at age 13, he has arthritis throughout his entire body. But despite being unresponsive to medication, Dylan keeps moving — he’s a drummer, skater, tennis player and even a national dance champion.

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Although the busy student athlete has a tight schedule, Patch was able to catch up with him via a question and answer email interview. Below are the questions along with the inspiring 13-year-old's answers.

Q: First, it would be great, Dylan, if you could pass along some biographical information. Tell us a bit about yourself!

A: I live in Hamden... I have lived there all my life since I was a month old, I was born in the Marshall Islands and joined my family through adoption when I was 3 weeks old.  I am a seventh grade student at Hamden Middle school. I live with my mom and dad. I have sisters ages 16, 11, 9 and 5. I also have older brothers who are married.

Q: Most people view arthritis as an older person's disease. And yet, you've been suffering since you were three years old. How has this challenged you as a young person, growing up?  Are there things you cannot do because of the disease? Has it held you back in any way from interacting with family and friends, as well as participating in events and activities with other kids your age?

A: There are 300,000 kids in the US with some type of arthritis. My disease (CACP syndrome) is extremely rare and arthritis is just one of my symptoms. 

I was born with my disease and my arthritis first presented itself when I was two years old. I have never known a life without arthritis.  My arthritis is throughout my entire body, both large and small joints. This has challenged me throughout my life so far because most mornings when I wake up I have alot of pain and stiffness and I just can not get up and hop out of bed like most kids. I can not play contact sports and although I am very athletic I try just about everything. 

When my arthritis is acting up sometimes it is difficult to do little things that most people take for granted because my hands can be weak.  So I might have a hard time opening a bottle or holding a pen or fork, or turning a door knob. I work hard in school trying to keep up with everyone else... but I get very tired sometimes. Arthritis attacks your immune system..Sometimes I can come home from school and sleep right until the next day. 

I do everything within reason, I might have to do something a little bit differently then everyone else. Sometimes my mother gets nervous because I like to try different things even if it might not be the smartest thing for me, but she understands that I need to try different things.

Q: Although you do suffer from the disease, I also read that you are a drummer, skater, tennis player and National Dance Champion! A national dance champion: please tell us more!

A: Dance has been my physical therapy since I was about 6 years old. I am a member of Studio BE and I compete with their team. I dance with my sister as a duo partner and with the groups and I do a solo. I especially like tap and hiphop. 

I am the current National Junior Mr Dance Ovations. I also received the title of Teen Mr. Starpower this season. My sister and I are also Duo National Dance Champions.

I really have learned to play tennis quite well this year. I am going to be a member of the Hamden Intramural Tennis Team this summer.

I have been ice skating since I was about 3 years old. I go to hockey clinics, and if I did not have arthritis I would be an awesome player on a team... but I settle to play for fun.

I love playing the drums and I am in the HMS band. I have been taking lessons for 3 years. I also play baseball for Greater Hamden.

Q:  Will you be participating in this weekend's walk here in East Haven? If so, why? And why are events like this important to those who have the disease, as well as for those who are hopeful to some day find a cure?

A: I will be walking with my team called Dylan's Dynamic Display... I should have about 50 or more members (hopefully) walking with me. But I am also inviting everyone out there to come and stand and walk with us for people who can not. 

I have been walking for 5 years. I walk to help bring awareness to others that do not realize that kids get arthritis too. It can strike any one at anytime, even children. Arthritis has no boundaries and it is cruel.

I also try to hope to raise money for research so that someday we might have a cure. Even though arthritis is the number on cause of disability in our country, it is the least funded. It really does not make any sense.

My arthritis has not responded to any medical treatments so far. There has been alot of progress for some people with different kinds of arthritis with certain medication, but not enough.

Q: And finally, I'm sure many people have asked you how you cope with such a debilitating physical conditional. But, I'm wondering if there is some sort of positive result from all of this, from what you have to go through on a daily basis — maybe something people from the outside looking in wouldn't realize, but you've come to know, understand and appreciate?

A: I am on a mission. I get to tell people about arthritis. I hope to inspire people and be a good role model for others with physical difficulties. I want to show people that you can accomplish things even if you need to do things differently then others and anything is possible.

I have really never known a life without arthritis and what it is like to be a healthy boy and move and be able to do what ever I want to. You can not tell just by looking at me that I have arthritis, although I do have alot of  deformation on some of my joints it is not always visible unless I am swimming or something. Sometimes I might be limping or moving slower than other times.

We pray alot in my house that someday when GOD is ready he will help me and put me in remission and maybe help the scientist find a cure. Until that time I just want to be like everybody else... I get mad at my arthritis but it still is there, I will not let it keep me down. I just need to keep up the fight and not let it take me down. I will take each day and be grateful that I am able to do the things that I can.  


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