BENEFITING: Cure JM Foundation
EVENT DATE: May 01, 2017
Liv was diagnosed with Juvenile Dermatomyositis at the beginning of November 2016. She was 4.5 years old. She had had symptoms since she was 2, though, none of our doctors suspected this very rare culprit. Liv's symptoms began shortly after she turned 2, looking back, we didn't know anything was going on. We thought she was having a normal regression because her momma was pregnant and she would no longer be an only child. She was in swimming lessons for a few weeks, she loved them, and then out of nowhere she began to hate them. She stopped climbing things in the house and at playgrounds. She was afraid of the swings suddenly, we assumed it was because she had almost fallen and associated swings with getting hurt.... we were partially right, she was afraid for sure, but it was because she had grown weak, and the core strength needed to stay upright on a swing was too much for her. She began tripping and falling daily, sometimes dozens of times per day. She was our first baby, we had no experience with other kids, "normal" kids, to base any comparisons.... surely kids just fall sometimes. We would tell Liv to be more careful, "watch your step, sweetheart." Liv's very first visible symptom was a strange facial rash, it looked more like she was flushed, so I never thought of it as a rash. It turns out it was what is called a malar rash. Liv also had some bumps on her knuckles, toes, knees and elbows... These bumps were actually Gottron's papules, but every time we asked a doctor about it, they said it was eczema. So of course we listened... As time passed, and these things began to seem more like they were just her normal than a regression, we began to worry a bit more. In June 2016, we finally got a referral to see a specialist at Children's hospital in Dallas. At that appointment they took an X-ray of her hips, the results were totally normal, but they noticed she got up off the ground how we described like a baby giraffe. This way of getting up is actually called Gower's sign. It is a major indicator of muscle weakness. Because of the marked muscle weakness, they referred us to neurology, so we were sent home to wait for a call to get an appointment. We found out it could be several months waiting on that call so we decided to seek out a different neurologist, and as luck would have it, they got is in within the week! Almost 6 months, a zillion blood tests, a muscle biopsy, an EMG, an MRI, and lots of appointments later, we got her diagnosis. Liv has been in treatment since the end of December 2016, she's responded very well. We are hoping she is well on her way to remission. Liv's medicines so far have been Prednisolone (daily), Solumedrol (IV infusions 3 days per week, currently 1x/month), Methotrexate (Injection 1x/week), and she also takes vitamins and supplements to help counteract the side effects of the drugs. We are lucky to live in this time of such amazing medical advancements and discovery of new treatments and cures. Cure JM foundation is specifically advancing research into things that will help diagnose and treat JM faster, and hopefully at some point, a cure as well. Please help us help CureJM, join us on this journey. Please share this with others, please donate if you can. Every little bit counts! Thank you for reading our story and again, Please share it.