 | Ciara Eddens Ciara was diagnosed with Still’s disease in March of 2001 at the age of 16 months old. It started with the common fevers and a rash that covered her torso. After daily trips to the doctor for two weeks straight and being told it was a viral infection that had to run its course, we took her to Primary Children’s hospital. We refused to leave until they figured out what was going on with our baby. Luckily her wrist almost doubled in size while we were there, so they had reason to admit her. After a week of testing (radiated bone scan, sedated echo cardiogram and countless blood tests) we were given a proper diagnosis of Still’s. Over the course of eleven years, she was on countless steroids and other medications to help keep her disease at bay. By 2012 she was diagnosed as Systemic Onset Juvenile Idiopathic Arthritis with permanent, debilitating joint damage in her neck, knees, hips, elbows, wrists, fingers, toes and jaw. In May 2012 she developed Macrophage Activation Syndrome caused by a bladder infection and was hospitalized for three days. She was able to come home and was feeling great. In July 2012, she developed a bladder infection and wound up back in the hospital. Another diagnosis of MAS and she was septic. July 5, 2012 she was admitted to PICU. July 10, 2012, she had a massive stroke caused by the infection and had a heart attack due to low blood pressure also caused by the infection. July 12, 2012, we had to say goodbye to her. Ciara was the happiest girl. She always had an infectious smile on her face that would light up any room she entered. She truly never complained about anything. She loved Hello Kitty, texting her BFF Bekah, Bruno Mars, teasing her brother Jamie, Hanging out with her family, animals and makeup. |
 | Jaxon Kilmeck Jaxon is our miracle boy. He was born at 27 weeks weighing 1.5 pounds. He’s always been on oxygen due to his prematurity. In April 2018, Jaxon was diagnosed with Systemic JIA. After needing increasingly more oxygen and numerous hospitalizations, we completed a lung biopsy for Jaxon that diagnosed him with Interstitial Lung Disease and Pulmonary Aveolar Proteinosis associated with Systemic JIA. Jaxon became very sick and continued to be hospitalized due to his increased oxygen needs, and in May, 2019 he received his tracheostomy, which as been one of the best decisions we have made for him. He loves coloring, puzzles, chasing after his dog and reading books. His favorite things are trains, horses and stars. Though he can speak past his trach, he communicates mainly with sign language. He started walking right before his third birthday and has loved that new big boy freedom. Like all children his age, he can be very mischievous and curious and that can get him into trouble. He also has a sweet and gentle personality, is a great cuddler and gives the best hugs and kisses! Jaxon does not know his diagnosis, so therefore, Jaxon continues to live every single day joyfully alive even in the midst of health challenges that he’s unaware of. We continually long to live more like Jaxon, Unstoppable. |
 | Mazie Leonard This is Mazie Leonard. In 2016, she was your average healthy, loveable 5 year old whose interests included dance, sports, riding her bike and playing with her siblings. After 6 months onset of insidious symptoms including rash, fever, and stiff, painful joints intermixed with a series of regular childhood illnesses, Mazie was diagnosed with SJIA. Those four letters would change her life forever. She instantly transitioned from the systemic features (rash, fever, organ involvement) to severe total joint arthritis. Her rheumatologist predicts that with the severity of her onset, she will be medically managed for life. Within 6 months of diagnosis and trial and error with multiple biologics, an effective course of treatment was established that lasted for roughly 2 years in managing her arthritis. Unfortunately, Mazie had a complication from initial steroid use, resulting in loss of range of motion in her hips, rendering her almost unable to walk. After over 18 months of intense therapy, up to 5 times a week, progress with her hips halted and she underwent surgery lengthening 12 muscles in her hips in August 2019. This was followed by a stint in an inpatient rehabilitation center with continued aggressive outpatient therapy. With the spreading out of medication for surgery, Mazie’s arthritis reared its ugly head post surgery, returning with a vengeance. We have yet to regain control. This means daily multi joint pain, sometimes enough to miss school, an inability to walk typically the first 2-3 hours per day, and use of a wheelchair for any long distance trip. Mazie has been stripped of the typical things that one takes for granted, such as participation in sports, school, and running and playing outside. These have been replaced with countless doctor appointments, multiple hospitalizations, unending therapy sessions, and infusions. Despite facing all of these obstacles, Mazie continues with a strong determination and optimism for a cure. She has found alternative activities such as swimming and art that allow her to continue to enjoy life despite the everyday reality of joint pain and limited mobility. |
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Given the spread of Covid-19, we are regretfully postponing the SJIA Family Conference scheduled at the end of May. We are very disappointed but still hope to hold the conference at the end of summer (we will reevaluate in
a 2-3 months if end of July seems possible).
In the meantime, we will be launching the virtual program from the SJIA Foundation - starting with a virtual Expert Panel about Covid, featuring SJIA & Still's experts and your questions. The session will be conducted via Zoom so you can join via phone, tablet or computer. We will announce the details of this session soon.
Happy Rare Disease day from the SJIA Foundation. The rarest day in the calendar to celebrate the rare people in our lives who we fight for. And all the dedicated, brilliant doctors, other foundations, and parents we work with.
www.rarediseaseday.org/
Rare Disease Day 2020 - 29 Feb
www.rarediseaseday.org
The main objective of Rare Disease Day is to raise awareness with policy makers and the public of rare diseases and of their impact on the lives of patients, and to reinforce their importance as a pub...We finally have the dates for SJIA Family conference - Friday May 29th to Saturday May 30th. We will be helping coordinate second opinion appointments and research participation for the SJIA patient - that will probably happen on May 27th - 28th. Signups coming soon!
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3584 Outlook Avenue, Cincinnati OH, 45208
