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Learn real-life, practical tips and tricks on how to navigate your child's school system including:
This webinar will be presented by Michelle Best, President of the Cure JM Chapter in Washington, DC, and Sue Carpenter, special education Resource Specialist teacher. Both Michelle and Sue are moms to children with JM. REGISTER NOW“He has endured so much, with so much grace”“Benjamin was born in June 2000. For the first 3 years of Ben's life, he was thriving! In fact, as a two and three-year-old, he caught our attention with how quick, strong, coordinated and agile he was. He was full of life and so happy. A couple of weeks after Ben's third birthday, I noticed raw redness around the nail beds on each finger on both of his hands. I took him to our pediatrician right away. Our pediatrician put Ben on a prescription of topical antibacterial ointment. Right after that treatment, I was back in the office with Ben because I could see it was not getting better. On this visit, the doctor changed the prescription ointment to an anti-fungal ointment for 10 days. At that visit I asked the doctor, "This isn't a systemic illness that is manifesting itself on his fingers is it?" He smiled and assured me, and patted me on my shoulder. During that time, I took Ben to the New Orleans Audubon Zoo with a friend and her son. We took them to the new playground area inside the zoo. Ben's friend was running around the play set. Ben just stood on the perimeter of the play set and just stared at it. I decided to place him on the play set and let him move around on it too, but he only moved around a little. Nothing was catching my attention about his behavior because it was so hot. When it was time to head home, Ben started out walking beside me and his friend was running ahead. Ben looked up at me and said, "My feet won't do it, Mommy. My feet won't do it." He wasn't whining or complaining. He was communicating to me that his feet "won't do it." I immediately picked him up and carried him to our car. He just laid on me with his arms hanging down and rested his head on my shoulder. When we got home, I rationalized that all that I saw had everything to do with just how hot it was outside and how I would have loved someone to carry me to the car as well because of the heat. I decided to take Ben to a dermatologist because his lesions were not going away. At the first visit, he looked at Ben carefully and asked me if Ben had trouble walking up steps or getting dressed. As he examined Ben, I felt scared inside. I asked him if he was thinking of something. He said he was, but that it was very, very rare and that it was something that he just needed to rule out. That following Monday he called and told me that he was so sorry, but the test results show that Ben likely has Juvenile Dermatomyositis. Hearing those words brought me to the floor. At the time, Juvenile Dermatomyositis sounded like a long impossible word I could never learn to say but now 16 years later, I can say it as smoothly as “pass the potatoes.” I wish it was still a long impossible word to me because that would mean Ben was not sick. Ben's life with JDM has been like a roller coaster. There have been times that he was profoundly weak and could not walk alone, or stand, sit or lift his head. He could not feed himself or dress himself. He struggled to have the strength to talk and could not call out for help if he needed it, but near the end of Ben's eighth grade year he was weaning off of his medication. He had a great summer and start of school. He went to the Back to School Dance and danced the whole night. I felt like remission was here for Ben. I felt like we were running through a beautiful grass field hand-in-hand with Ben to remission, but then a giant 2x4 swung around and slammed us all on our backs. JDM took a fierce grip on Ben again with a major flare. He missed the rest of his freshman year in high school. The principal and administration and Ben's teachers had a meeting and figured out a way they could help Ben finish school that year. Ben finished school that year with a great report card, just a week later than his classmates. For the rest of his high school years, he forged his way through and with such a good report. He graduated on time in the accelerated program with honors with Magna Cum Laude recognition. He never complained or made excuses. He just plowed through everything that faced him. But, unfortunately, he was not well enough to attend his graduation ceremony because he was sick with complications from JDM. We were heart broken when we realized he was not going to be able to make the graduation ceremony. But, our son Christopher had an idea, ‘Why don't we see if the school would surprise Ben and come to his party and present him with his diploma at his party in front of everyone?” I loved the idea, but wasn't sure they would do that.
It turns out, the school administration had already met and wanted to have a special graduation ceremony just for Ben. When they found out about the graduation party we were having for Ben they said, "We will do whatever the Wessels want us to do, just name the place and the time." So, the scene was set for a BEAUTIFUL night of love for Ben. The President, the Principal, the Vice Principal of Academics, and Ben's counselor, all came to the party to present Ben with his diploma. The cherry on top was that his friends decided to surprise him too. They decided they would get dressed in their graduation tuxedos and recreate graduation for him. The ceremony was SO BEAUTIFUL and moving for all of us there who love Ben so much. Two weeks ago, Ben started college at LSU. So far, all is going well. He is majoring in Biological Sciences at LSU and he hopes to go to medical school. From the very beginning, we have fed Ben's spirit. We talk about things in his future and constantly feed his inner strength because we know he calls on that every day, more than I could ever pretend to know. Ben has clawed his way through all his years of school. He has had his lion's share of suffering, but he has also had his lion's share of love. And, love is a crucial "medicine" in the care of any child fighting for their life. He shows us true perseverance and fortitude. He has endured so much, with so much grace." Lisa Rider, MD, and IMACS Receive “RARE Champion of Hope” Award
On September 20, Lisa Rider, MD, and The International Myositis Assessment and Clinical Studies Group (IMACS) received the "RARE Champion of Hope – Collaboration in Research" award from Global Genes, a rare disease patient advocacy organization. The "RARE Champion of Hope" award recognizes innovation in research and advocacy in rare diseases. The awards were chosen by a panel of rare disease experts from a list of over 100 individuals and organizations worldwide that were nominated by their peers for their notable efforts in rare disease advocacy, collaboration in research, science, medical care and treatment. Dr. Rider and her IMACS' co-coordinator Frederick Miller, MD, PhD, received the award on behalf of the group. IMACS is a coalition of physicians and researchers with experience and interest in myositis. The group works to improve the lives of children and adults who suffer from myositis by discovering better therapies through understanding the causes of these diseases. IMACS is part of the National Institute of Environmental Health Sciences (NIEHS) at the National Institutes of Health. Recently Dr. Rider shared some thoughts on how IMACS' work may impact the care of juvenile myositis patients: "IMACS is researching both children and adults with myositis, and we've developed work in parallel, including validated outcome measures, response criteria, classification criteria and clinical trials. There are many similar issues in both the children and adults, and the work will facilitate better care of our juvenile patients when they reach adulthood. This work has also integrated JM into the whole myositis spectrum and created better awareness of JM." On receiving the award, Dr. Rider said, "It's an honor to receive this award on behalf of IMACS. It's all of IMACS that's receiving this award. I think it's powerful that all of these researchers are working together to better the lives of myositis patients and I think Global Genes recognition will better the recognition of JM around the world." Dr. Rider has devoted her career to JM research, helping to advance understanding of juvenile myositis. She has been a leader in fostering international collaborations that have helped further advance juvenile myositis research. She is the Deputy Chief of the Environmental Autoimmunity Group at the National Institute of Environmental Health Sciences, National Institutes of Health. She is also the Director of IMACS, the International Myositis Assessment and Clinical Studies Group. She's been a member of Cure JM's Medical Advisory Board since 2011 and was appointed as Chair in 2016. JOIN US AT A WALK NEAR YOU
Come together to support children, teens, and young adults fighting Juvenile Myositis. REGISTER HEREFind a Walk Strong® event near you:
Contact us at walks@curejm.org for more information or to get involved. UPCOMING EVENTSLearn more or RSVP here.
Contact info@curejm.org for more information and to get involved. Do you have a story you would like to share? Contact enews@curejm.org |
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