Dmitri Duval, a 7 year old Crown Point boy, suffers from Juvenile Dermatomyositis, an auto immune disease that attacks skin and muscles. It is potentially life threatening, affecting only 2 in a million children.
Dmitri Duval looks forward to going to the beach, just like other kids. He’s not like other kids, though.
“The sun is bad for him,” said Erin Duval, Dmitri’s mother. “It is almost like he is allergic to it. He needs to wear sun block and a sun hat when out side. We do try to let him live his life like every other child, so we do go to the beach. He just wears his surfer swim suit, longer sleeves, etc. And tons of sun block. He wears a hit hat it the water.”
Dmitri, a 7 year old Crown Point boy, suffers from Juvenile Dermatomyositis, an auto immune disease that attacks skin and muscles. It is potentially life threatening, affecting only 2 in a million children.
“They say if a JDM child gets a sunburn it can cause the disease to resurface,” Erin said. “Some kids are very sensitive and get a rash just from certain lighting. Thankfully Dmitri is not that sensitive, and we take the precautions to prevent tanning and sun burn. From my understanding some kids aren’t affected by the sun, but there is no way to be sure, so we will not take that chance.”
Dmitri, the son of Erin and Neil Duval, was diagnosed with Juvenile Dermatomyositis in 2009 at the age of 3. He underwent high doses of oral and IV steroids and almost three years of a weekly chemotherapy injections. He is now in remission.
“Dmitri was 3 when he started getting a strange rash on his hands,” Erin recalled. “I was told it was eczema, psoriasis, warts, etc. Then it started to appear in his legs. He was bruising and had bug bites that wouldn’t heal. The doctors said sensitive skin. After about four months he started to become unable to walk. He could no longer get out of bed. He couldn’t sit on the floor to play because his muscles were deteriorating so badly.”
A series of tests alarmed doctors and family.
“His pediatrician had never heard of JM,” Erin said. “She finally figured out what she thought it was, but we had to go to Burlington to have the diagnosis confirmed. He was immediately admitted in to the hospital to start IV steroids, methotrexate (a chemotherapy drug) and have MRIs and more blood work to confirm. He was on the steroids for 15 months and the methotrexate for just shy of three years. He has been med free for a year.”
The disease is so rare, few doctors recognize it.
“My son went misdiagnosed for at least four months while trying to figure out what was going on with him,” Erin said. “The faster kids can be diagnosed the better the outcome. This disease could come back at any time. He can no longer be in the sun without proper sun block and hats, etc. If he were to receive even a mild burn it could cause the disease to come back.
“When he is in school they have doctor’s orders to make sure sun block is applied every day, as this is a huge must,” she said.
Dmitri just completed first grade at Crown Point Central School.
The Duvals are optimistic about Dmtri’s future.
“For Dmitri his prognosis is good,” his mother said. “A third of the children with JM will respond well and never have a reoccurrence of the disease, a third will have a reoccurrence at some point and maybe multiple times, and a third will have a chronic course that does not respond well to the treatments.
“Since Dmitri was diagnosed we have become a part of the CureJM.org Family,” Erin added. “Without them we would have been lost. Since his diagnosis three children have lost their battle with this disease.”
To raise awareness about Juvenile Dermatomyositis, the Duvals gathered a team to run in the Biggest Loser Half Marathon and 5K road races in Plattsburgh this spring. They raised more than $1,500 for the Juvenile Dermatomyositis Foundation.
Taking part in the half marathon were Erin Duval, Kyle Dinsmore, Christina McDonough Slattery, Maria Ann MacKay, Michele Leroux and Angele Vanderlaan-Leroux. Running the 5K were Ann Marie Galvin, Delaina Dinsmore, Todd Condon, Tonya Whitford Condon, Erin Burroughs, Ginny Crowfoot, Chris Crowfoot and Rebecca Granger Moore. Running the mile children’s run were Dmitri Duval, Riley Dinsmore and Bailey Dinsmore.
“We decided to do the Biggest Loser run because we were unable to attended the annual conference (in Chicago) for JM this year,” Erin said. “I had already committed to run the half (marathon) so I felt I still needed to do this, even though it wouldn’t be in Chicago with the rest of the JDM families. Initially it was my brother and I who were going to run. When realized the trip was no longer an option we decided to create a team here. The goal in Chicago was to raise awareness, so we needed more people here if we were going to be noticed.”
More information on Juvenile Dermatomyositis is available online at www.cureJM.org. Dmitri also has a Facebook page called Dmitri’s mission with information.