Help Rooney Fight Juvenile Dermatomyositis!

Hi, my name is Lindsey and I am raising money to help Rooney and her family fight Juvenile Dermatomyositis!

In December of 2019, Rooney developed a rash that was diagnosed as eczema. But Rooney’s amazing parents, my best friend Megan and her husband Jeff, had the strong parental inclination to question that diagnosis. Repeatedly. At least four more doctors would tell Megan that Rooney’s rash was caused by eczema or allergies, until one dermatologist finally looked a little deeper. This doctor said the word “dermatomyositis” for the first time. After undergoing a skin biopsy (a scary thing for anyone!), suspicions were confirmed and Rooney got her diagnosis.

Juvenile Dermatomyositis (JDM) is an autoimmune disease that causes a lot more trouble than a rash. JDM triggers a major inflammatory response and causes Rooney’s immune system to turn against her body’s healthy cells and tissue. This can cause potentially serious damage to her muscles and skin on a cellular level, which can lead to painful or worrisome rashes and severe weakness.

Rooney will have to manage JDM throughout her entire life. There is no known cause and no known cure. There is also not a doctor in VA who is experienced in treating JDM. In order to medically manage her condition, Megan and Jeff have to take Rooney to see a specialist at Duke University in Durham, NC.

In November 2023, Rooney began treatment with methotrexate and prednisone. These medications make it more difficult for her white blood cells to attack her healthy cells, but these are big pharmaceuticals with big side effects. And Rooney is a little girl. While her peer group is learning to tie their shoes and add double digits, Rooney is learning to rotate injection sites, be brave for biopsies and MRIs, and function around the rotten side effects of long-term steroid use.

While these treatments have provided some improvement, some aspects of Rooney’s condition have actually continued to worsen. This week, Rooney will begin infusion therapy with IVIG (Intravenous Immunoglobulin). IVIG is a collection of antibodies, made from the plasma donations of thousands of people. It is administered through IV infusion with the goal of normalizing a compromised immune system. Rooney will have to undergo these 12-hour (TWELVE HOUR) infusions once a month, at Duke University. She will also have diagnostic testing performed often to measure the success and outcomes of her treatments.

As with most rare autoimmune diseases, JDM requires newer, advanced (expensive) treatments and finding the right combination to effectively manage it becomes a very costly process of trial and error. Not only are the medical bills racking up, but the family is having to travel to Duke every few weeks which means travel expenses and time away from work for Jeff and Megan.

Financially, Mentally, Emotionally, Physically.

This is impacting Megan, Jeff, and all of their children in every single aspect of their lives and the lives of those who love them. Megan and Jeff are helpers. They are encouragers in a discouraging world. They both love loudly, supportively, and unequivocally. They would never be the ones to ask for anyone to donate their hard-earned money to them. But I will most certainly ask on their behalf. My hope is that not only will the dollars donated help offset some of these astronomical costs, but also that they can feel rallied around and lifted up… the way they have rallied around and lifted up so many of us. Every little bit really does help, and I’m hoping there’s a lot of little bits!