Murphy

Murphy 

Murphy is 9 years old. He was diagnosed in June of 2019 when he was 7. We didn’t really know what JDM was or what it entailed. We had never heard of it before. For Murphy it all started with skin issues. Looking back, he probably had skin issues since he was 5 but as a family, we thought it was birth marks/tanning/etc. and didn’t think anything of it. But the skin discoloration was getting worse and he started to have significant calcification in his hands. After diagnosis we went through the myriad of emotions and did our best to support what was going on. We did start medication during the summer of his first diagnosis and that was really tough. Having a 7-year-old taking pills daily, plus more pills weekly, was really hard. To say it was a battle would be putting it lightly. But then it became easier and he was our brave little boy. Murphy started physical therapy for dexterity in his hands and that was just another part of our journey. In January of 2020, he started IVIG infusions. Watching our son get infusions was probably the hardest thing that has ever occurred. To know that he was this little boy getting 8-hour infusions every month, having to watch him with the needle/IV in his arm, it was really, really emotional! But Murphy is so brave! He is honestly braver than anyone in our family. 🙂   He complains sometimes but most of the time he knows that all of this is going to help him. He is making good progress. He has stopped the physical therapy and now only gets the IVIG's every 8 weeks. He is still on daily/weekly medication but overall, his spirit is good. To any family who has a child that is diagnosed with this - you are not alone. There are so many kids who are affected and we are all here to support you. Stay strong! And know that we are all in this together.