THE FACE OF ADVERSITY: Brave Beatty teen faces an incurable disease

Life is demanding and ever day our bodies are called to do things such as going upstairs, walking up hills or even getting out of bed. For most of us these are routine and mundane, but for Brianna Grundy, what others consider normal movement can be a problem.

Grundy is a 13-year-old teenager from Beatty, who never had any health issues until recently. She has lived in Beatty her entire life. In fact, up until she was diagnosed with a rare disease called Juvenile Dermatomyotis (JDM), Grundy was highly active with sports, and according to her mother Julie, she really never suffered from a serious ilness.

In September 2012, she was playing volleyball, one of her favorite sports, going out with her classmates and running around in the hot Southern Nevada sun. She loves swimming, and often went to the Beatty pool with friends.

Things began to change for Brianna in the late fall. Her mother, Julie Grundy, discussed the onset of the illness.

“She had been complaining during the volleyball season that both of her arms and both of her thighs were super sore. I finally took her to the doctor Nov. 15 at Sunrise Hospital (Las Vegas) and they thought she had an allergic reaction. She had been complaining for the past few weeks and we thought it was growing pains. She was not in pain, just sore. She said it felt like she over-exercised, when you do 200 sit-ups, and well, that is how sore her arms and legs were,” Julie said.

Julie explained that the disease is caused by a ramped up immune system. Brianna’s own body tissues were being attacked by her immune system.

“As a small child, she was never getting sick and I always thought that was a good thing. After awhile, since there are no germs left in the body, her immune system started attacking her muscles. This disease weakened her a lot, and for whatever reason, it attacked both sides of the body. Her neck became weak, her shoulders and arms. Her heart has not been affected. It can affect her kidneys too if you don’t get on medication,” she said.

Julie said she took her daughter home with nothing resolved, but then five weeks later Brianna got worse.

“I played Bunco on Thursday night and Brianna was with me and we were going home. She could not get in the truck. She said she could not lift her legs or arms. I asked if she could crawl into the truck and she said her legs kept collapsing. I went straight to the ER,” the mother said.

The doctors diagnosed her at 10 p.m. on Nov. 16. They started her on steroids and sent her home and she was supposed to start therapy. Somewhere along the line signals were mixed. Julie said there really was no way for her daughter to start therapy at home or around Beatty, or for that matter, in the state of Nevada. When Julie brought this up to the Las Vegas hospital, her daughter had progressively gotten weaker. Brianna had to be rushed again to the hospital.

“She started to lose her balance. She went back to Las Vegas and was admitted Dec. 4 until Dec. 12 and from there we went to Los Angeles,” Julie explained.

The Las Vegas hospital realized their mistake and sent Brianna to the only hospital that could get her the physical therapy she needed. She had to be taken to Los Angeles where she has been since Dec. 13.

Brianna’s life had gone from one of running around to barely being able to walk. The weakness was also accompanied by a rash on most of her body.

When Brianna first arrived in Los Angeles she had lost all her mobility. Julie and her husband Eric went from Brianna being 100 percent independent to 75 percent dependent on her parents. She couldn’t climb, pick up things, feed herself, brush her teeth or comb her hair. She went from running and jumping to moving slowly, to not being able to lift her legs and then she was in a wheel-chair. All this in a matter of months. The disease frightened the entire family and certainly has taken a toll on Brianna.

“Well, when I first noticed that everything was changing, around September at the end, my muscles were really sore and we just thought it was growing pains. At the end of October, I started getting weak. I was scared. It was scary because when I tried to run I would fall, and it seemed like I fell in slow motion. I would have a hard time getting up. Teachers would think I was playing around and did not want to do my stuff like typical teens would do, but I wasn’t. It was just weird.

“In November I got weaker and a rash broke out on my face and on my forehead. We thought it was bad acne but it was part of the disease and there were rashes on my hands and rashes on my arms. When I couldn’t do things on my own I started to become really frustrated. I was scared but not so much depressed. I had good spirits. When I was in Las Vegas I did not think it would get better,” Brianna said.

Moving to the children’s hospital gave her hope. She responded to the medications and gradually started to improve.

Dr. Rhina Castillo is an attending physician for Brianna who has been working on JDM patients for the past three-and-half years. Castillo said the disease is rare and is diagnosed only once per million people. It will occur usually in young people ages 6 to 9, and then in older people from 30 to 40. If left untreated, it can be fatal because it can attack the heart. Castillo said Brianna was lucky to have a rheumatologist at Sunrise Hospital from California to make the diagnosis.

According to the doctor, studies show the disease is usually contracted by females and Castillo said this could be in the genetics of the disease. “In adults, women get it more often than men. I don’t know if it is hormonal in the younger kids but the sex distribution is the same with them,” she said.

An interesting aspect of the disease is that the sun is the number one cause of flare-ups. The doctor explained the sun is bad for Brianna because it adds more antibodies to her system which already produces too many.

“The UV rays from the sun cause the skin cells to die. When they die, the cells release antibodies and these antibodies add to the immune system even more. It’s like adding fuel to a fire,” Castillo said.

According to Castillo, treatment requires a Pediatric Rheumatologist. There are only 150 in the country. There are 11 states that don’t have one and Nevada is one of them. Doctors fly routinely to Las Vegas from Los Angeles and this is how Brianna was diagnosed.

Castillo said Brianna will live with this disease for the rest of her life.

“There are treatments, and the goal will be to get her into remission at one point so she is not on so many medications as she is now,” the doctor explained.

Brianna expects to be in Los Angeles until Feb. 21. Her mother is staying at her side through this ordeal and even quit her job to get her daughter through this. The family does have medical insurance, but the insurance does not cover everything and so the town of Beatty is holding a benefit dinner for Brianna at the Beatty Community Center on Feb. 9 from 4 to 7 p.m. For $8, a pulled pork dinner will be served and there will be an auction and bar.