FORNEY, Texas – Juvenile dermatomyositis, also known as JDM, affects only three out of a million children each year in the United States. The likelihood of being diagnosed with JDM in a town of approximately 15,000 people and knowing someone else diagnosed with the same disease in that same town is very slim.
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Most people in Forney, Texas, are familiar with 8-year-old Emily Hough, a third grade student at Crosby Elementary, because of the organization she founded – Emily's Monkeys. Emily was diagnosed with JDM in July 2011 and started Emily's Monkeys as a way to give back to Texas Scottish Rite Hospital for Children after she was treated there.
In December 2013, Emily's Monkeys Facebook Page received a private message from Summer Chaplin of Forney, Texas, who was at Texas Scottish Rite Hospital with her 4-year-old daughter, Ayla Chaplin. The message's content defied the odds – Ayla was diagnosed with JDM.
When Emily's dad, Josh Hough, received the message, he said, “That's not likely. There's no way another kid in Forney has JDM.” Until the message, the Houghs only interacted with other JDM patients and their families at the hospital and in online support groups on Facebook.
Ayla's journey started when she was just three years old after she developed rashes around her fingernails. Following an exhaustive online search, Summer believed Ayla had JDM but her family's pediatrician could not confirm her findings. However, a year later as the rashes persisted, her pediatrician investigated further and concluded she had JDM.
With her pediatrician's recommendation, blood work and lab tests were conducted and sent to Texas Scottish Rite Hospital. Ayla was accepted by Texas Scottish Rite Hospital and was officially diagnosed with JDM on December 16, 2013.
“The diagnosis didn't come as a huge surprise to us because Summer suspected it from the beginning,” said Ayla's dad, David Chaplin. “It was more shocking when the doctors described the severity of the disease and the course of treatment.”
At their first appointment at Scottish Rite, David said doctors informed him, “This is serious and this is severe. We're going to be very aggressive with the treatment. Each case is different but we've learned a lot about the disease because of the research we've done here at Scottish Rite.”
Ayla, who has an identical twin sister, Evie, is currently undergoing weekly treatment, much like Emily. Although JDM is an immune system dysfunction, an incident such as an infection, injury, or a sunburn will trigger the immune system as expected. However, the immune system doesn't stop as it should after the triggered incident and continues to attack the body's blood vessels.
Ayla and Emily, along with their families, formally met for the first time on May 3, 2014, during the interview for this story. At the meeting, Emily signed Ayla's copy of her Emily's Monkey book.
“Ayla was really excited – not to know someone has the same disease, but to know somebody else is like her and that she's not the only one,” said Summer. “We read Emily's book [Emily's Sock Monkey: A Great Find!] countless times and she loved it. Knowing the girl from the book was from Forney was very exciting for her.”
Emily's Monkeys is holding their second annual community sock monkey event on Saturday, May 10, 2014, in downtown Forney in conjunction with the Forney Arts Council's 2nd Saturdays. An event, Ayla says, she won't miss.
The sock monkey event will be held at the Forney Independent School District Academic Center at 309 South Bois D'Arc Street. Parking and the entrance for the event will be at the rear of the building. The sock monkeys made will be donated to surgery patients at Texas Scottish Rite Hospital. Raffle tickets for prizes to be given away the event are available at Emily's Monkeys Facebook Page. 100 percent of the donations benefit Texas Scottish Rite Hospital.
In December 2013, Emily's Monkeys Facebook Page received a private message from Summer Chaplin of Forney, Texas, who was at Texas Scottish Rite Hospital with her 4-year-old daughter, Ayla Chaplin. The message's content defied the odds – Ayla was diagnosed with JDM.
When Emily's dad, Josh Hough, received the message, he said, “That's not likely. There's no way another kid in Forney has JDM.” Until the message, the Houghs only interacted with other JDM patients and their families at the hospital and in online support groups on Facebook.
Ayla's journey started when she was just three years old after she developed rashes around her fingernails. Following an exhaustive online search, Summer believed Ayla had JDM but her family's pediatrician could not confirm her findings. However, a year later as the rashes persisted, her pediatrician investigated further and concluded she had JDM.
With her pediatrician's recommendation, blood work and lab tests were conducted and sent to Texas Scottish Rite Hospital. Ayla was accepted by Texas Scottish Rite Hospital and was officially diagnosed with JDM on December 16, 2013.
“The diagnosis didn't come as a huge surprise to us because Summer suspected it from the beginning,” said Ayla's dad, David Chaplin. “It was more shocking when the doctors described the severity of the disease and the course of treatment.”
At their first appointment at Scottish Rite, David said doctors informed him, “This is serious and this is severe. We're going to be very aggressive with the treatment. Each case is different but we've learned a lot about the disease because of the research we've done here at Scottish Rite.”
Ayla, who has an identical twin sister, Evie, is currently undergoing weekly treatment, much like Emily. Although JDM is an immune system dysfunction, an incident such as an infection, injury, or a sunburn will trigger the immune system as expected. However, the immune system doesn't stop as it should after the triggered incident and continues to attack the body's blood vessels.
Ayla and Emily, along with their families, formally met for the first time on May 3, 2014, during the interview for this story. At the meeting, Emily signed Ayla's copy of her Emily's Monkey book.
“Ayla was really excited – not to know someone has the same disease, but to know somebody else is like her and that she's not the only one,” said Summer. “We read Emily's book [Emily's Sock Monkey: A Great Find!] countless times and she loved it. Knowing the girl from the book was from Forney was very exciting for her.”
Emily's Monkeys is holding their second annual community sock monkey event on Saturday, May 10, 2014, in downtown Forney in conjunction with the Forney Arts Council's 2nd Saturdays. An event, Ayla says, she won't miss.
The sock monkey event will be held at the Forney Independent School District Academic Center at 309 South Bois D'Arc Street. Parking and the entrance for the event will be at the rear of the building. The sock monkeys made will be donated to surgery patients at Texas Scottish Rite Hospital. Raffle tickets for prizes to be given away the event are available at Emily's Monkeys Facebook Page. 100 percent of the donations benefit Texas Scottish Rite Hospital.