Little Gracie Miller is about 6 months into her battle against an incurable disease, and her Tracy
grandparents are spending the month of June raising money to help her parents pay for expenses.
By Per Peterson
Little Gracie Miller wears a lot of hats. She has to.
Gracie, the granddaughter of Jim and Ade Miller, suffers from Juvenile Dermatomyositis, a rare autoimmune disease in which the immune system mistakenly attacks healthy tissues in the body, such as muscle tissue and blood vessels, causing muscle weakness, as well as skin rashes. It affects about three in 1 million children in the U.S.
The hats are not a metaphor — they’re for protection from the sun, since being outside can ignite Gracie’s symptoms. That means whenever her parents, 2004 Tracy Area High School graduate Nick and Kelly of Pelham, Massachusetts, prepare for the 30-mile drive to Boston for her treatment, it’s on with the hat, and on with the sunscreen.
“We have constant worry about the sunshine,” Kelly said. “We have to put sunblock on her every single day. Even when she’s lubed up in sunblock she’s got a hat on. Even in the winter. The nurse said, ‘Don’t miss a day.’ There’s no messing around with it.”
The Millers certainly aren’t messing around, nor are they taking anything for granted since their daughter’s diagnosis
Gracie takes steroids once a month and recently started a new treatment — IVIG — she takes every two weeks. IVIG, or intravenous immunoglobulin therapy, is essentially donated human plasma/antibodies. Kelly said it takes thousands of donors to make enough for one treatment against several autoimmune diseases, and with dermatomyositis. Its purpose is to block the immune system from attacking muscle and blood vessel tissue.
“Before, I dreaded when my kids got their flu shot, now we take her in every week to get IVs done,” Kelly said. “It’s a lot to wrap my head around — just the medication list. But it will be worth it in the end.”
Gracie, who turns 3 on Tuesday, was diagnosed with JDM in December. Her pediatrician referred the family to Boston Children’s Hospital, where she was diagnosed the same day and admitted for a few days for tests and to start treatment. The diagnosis left her parents shocked and heartbroken, but as Kelly posted on Facebook, they realized quickly that she was in the most qualified hands to treat her condition.
“We definitely kind of suspected something was going on with our baby,” said Kelly. “I don’t know if it was denial or what, but I had myself convinced that it was maybe a fungal rash or something I made the mistaking go Googling her symptoms — that can be more scary than anything. But I wasn’t mentally prepared when we were told what was going on.”
So began a surreal time for the worried young parents. Kelly said they were able to stay strong because they were surrounded by a caring staff at Boston Children’s Hospital. They didn’t sugarcoat Gracie’s condition, however.
“One of the doctors was really sweet — she said it’s going to be alright, but it’s going to be a tough couple of years,” Kelly said. “It was the brutal honesty I needed.”
Kelly started to question herself after accepting what was happening with her daughter. Was JDM something she passed onto Gracie? But the guilt phase was quickly replaced by the realization the family would soon have new normal dealing with a disease that has no cure.
For more on this article, see this week’s Headlight-Herald.