charity

Team Emily: Help Stop Juvenile Rheumatoid Arthritis

Kids Get Arthritis Too!

I tend to get a lot of soreness in my joints.  Especially at the end of a long distance run. Or after painting an entire room. Or from sitting at my computer for too long.  Or when I wake up the morning after a hard workout.  That’s just because I’m 37.

Hubby, Me & Emily
Hubby, Me & Emily

My niece and god-daughter Emily has been living with pain in her joints for the last 11 years. When she was still a baby she was diagnosed with Juvenile Rheumatoid Arthritis.

For the most part you’d never know that Em was dealing with anything out of the ordinary for a 7th grade girl. She plays soccer & basketball. She’s obsessed with her phone. She takes a TON of selfies and patrols Snap Chat in her free time. Except when the pain is more than she can manage and has to stay home from school. Those days suck.

The support she receives from the Arthritis Foundation comes in many forms. The greatest of which is the opportunity to attend a summer camp, Camp M.A.S.H., for kids who are battling arthritis. She has made good & true friendships with other kids who truly get what it feels like to miss school because the pain is too much.

Every year our family participates in the JRA March at the MOA so that we can support Emily and send more kids to camp. Now that Emily is older she takes a more active role in the fundraising. If you are interested in joining the fight please make a donation!

Use this link to make a donation: http://walktocurejuvenilearthritis.kintera.org/meganstebbins

The following is a snippet of a speech that Emily gave the University of MN Alpha Omicron Pi Sorority. Their international Philanthropy is Arthritis Research. The sorority is an amazing support to the Arthritis Foundation. Every month during the Juvenile Arthritis Family Meeting, the women from the sorority swim with the kids and entertain them for 2 hours so the parents can listen to speakers and support each other.

Hello. My name is Emily, I have Juvenile Idiopathic Arthritis.This type of arthritis is an auto immune disease. It makes my body attack itself. So my joints get inflammation and it wears the bones down. Juvenile Arthritis makes your joints scrape against each other because all cartilage is gone. My type of arthritis also causes inflammation in my eyes and I have to get them checked a lot. 

IMG_6404
Emily from the I Am the Face of Arthritis campaign

When I was 17 months I was limping and wouldn’t walk. My parents took me in and it took a month to figure out it was arthritis because it’s such an invisible disease. I had shots into my knees and elbow.  I had to drink Methotrexate with juice. Methotrexate is a kind of chemotherapy that makes your body stop fighting itself. After a few years,it stopped working and I had to take the Methotrexate drug in a shot every week. I would take it on Friday and be sick all day Saturday. These past three years have been tough with trying new medicines, having flares, dealing with chronic depression, and quitting sports and activities because of my arthritis. I started another 2 shots of Enbrel every week to try to get my arthritis to stop.

I still get sick a lot from my Methotrexate but I have learned distractions.  But I am lucky to have met such nice people who are dealing with it to at Camp M.A.S.H. and Camp Cambria every summer. They are my arthritis family.

Right now I am on at least seven pills a day or more. I am on one shot of Methotrexate, and two of Enbrel.  Because of these strong medicines I must have labs every three months to make sure my body is not getting damage from the medications.

Some days it’s so bad I can’t get out of bed. Some days I have to take the elevator at school and miss out on things. I hate not being able to participate. I hate having to stand or sit on the floor because it hurts. I don’t like asking for help or saying I can’t do things. Some people are mean and say things like “kids don’t get arthritis” or think I am faking. But I always remember people have it worse and thinking of all the people by my side to help me fight this gets me through.

Every time I am at *that point* of a race when I feel like I’m breaking down I think of my girl Emily. She is extremely tough – much tougher than me – but I do wish that someday there would be some cure or drug that would allow her to not have to be so tough. Here’s hoping…

Use this link to make a donation: http://walktocurejuvenilearthritis.kintera.org/meganstebbins

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