March 2020 – Meet Trent, a Real Life Super Hero!
March 1, 2020
May 2020 – Meet Emily, A Young Adult Who is Going Places!
May 4, 2020
Meet TJ (13 years old)...once you get this kid talking, your day will definitely be brighter.
There are so many amazing kids out there who spread kindness and love into this world; and this month we are celebrating TJ (13 years old). This teenager was diagnosed with crohns, colitis, and ethesitis-related juvenile arthritis at 8 years old. While these chronic illnesses have been difficult to endure, TJ also knows how important it is to live life to it’s fullest, despite challenges.
TJ gets an infusion every six weeks and is on daily meds. Even with treatment, his pain can sometimes get so intense…especially with too much activity. Because of this, TJ attended a four-week long pain management and rehabilitation clinic for “amplified musculoskeletal pain syndrome” (AMPS). AMPS causes him intense pain that may be constant or may come and go. Depending on how and where it affects the body, AMPS may also be referred to as:
- complex regional pain syndrome(CRPS — also known as “reflex sympathetic dystrophy” — pain in a specific area of the body that’s most often caused by things like a sprained ankle, broken bone or soft tissue injury).
- juvenile fibromyalgia(sometimes called “diffuse amplified pain” or “total body pain” — when kids have muscle pain throughout the body).
The four-week program consisted of daily intensive physical therapy, occupational therapy, behavioral health and a weekly family session with psychology. TJ was in a wheelchair prior to starting the program and slowly gained his strength and endurance back, over the course of four weeks.
The first time our “Purple Playas” VP, Parker, really got to know TJ was at Camp Boggy Creek, during a family weekend. TJ was so excited about Camp and ready to answer the camp leader’s questions and get up and dance. In fact, at one point he was brought up to the front, given the microphone and he led the group. He poured so much joy into the room through his enthusiasm, humor, and contagious excitement. He said that Camp is one of his favorite places. He gets to enjoy fishing, along with crafting in the wood shop…but most importantly; he said he “gets to meet new friends”.
Friendships are the best thing that has happened for TJ through his chronic illness. He not only loves the friends that he has met at camp. He shared that one of the best things that has come from all he has endured is that he has met new friends while at the hospital and at the National Juvenile Arthritis Conference. You see, “talking” is one of TJ’s favorite things to do! He also loves playing video games and is a big movie buff! But if you ever get a chance to sit down and talk with TJ, you will not only bring him joy, but your heart will overflow with joy too, because he will most certainly make you “think” and “giggle”. Once you get this kid talking, your day will definitely be brighter. TJ is such a gift to this world.
When asked what he would advise to other kids with chronic illness, he said, “Try not to look when getting shots.” In addition, he shared that it feels good to raise money for the Arthritis Foundation and Purple Playas Foundation. He really enjoyed a fundraiser his family did where they gathered up a bunch of food truck businesses for a food truck rally. When questioned as to why he raises money, he said, “…Because it raises awareness for arthritis!”
We are very proud of TJ and all he has done to overcome his chronic illnesses and pain, but what “he” is most proud of is that through everything, he has continued to make good grades at school! Way to go TJ! We can all learn from you!
