Editor's note: Ridgefield residents Jessica and Christopher Curran established a nonprofit Kindness Over Muscular Dystrophy to benefit Conner and all who are battling Duchenne Muscular Dystrophy (DMD). "It is so important to raise funds now. We were not able to have our biggest fundraiser this year due to COVID," says Jessica Curran. Any support you can offer is appreciated! Click HERE to make a donation.
“While our lives were forever changed when we received Conner’s diagnosis, we’ve somehow always found our way back to hope,” Conner’s mom, Jessica Curran said today.
Together with her husband Christopher, for the past five years, she has worked tirelessly on behalf of Conner and all who are battling Duchenne Muscular Dystrophy (DMD), a progressive muscle-wasting disease.
Their way back to “hope” arrived by way of an experimental gene treatment that has been life-changing for the Curran family. “Conner is not just walking, but running faster than ever, thanks to an experimental gene therapy that took more than 30 years to develop,” NPR wrote in a feature article released today titled, A Boy With Muscular Dystrophy Was Headed For A Wheelchair. Then Gene Therapy Arrived
Conner was the first patient in a clinical gene trial, one that came with enormous risk, but an upside that meant the function and structure of Conner’s muscles would improve.
“Being the first patient in a clinical trial comes with many risks, with just the hope of benefits, if any at all,” Jessica said. She explained that prior to Conner receiving treatment, she and Chris had to sign papers stating that they understood the many risks that came with a glimmer of hope - one of the risks was losing their son forever. “It was the hardest decision of our lives knowing one of the many risks was death,” Jessica explains.
Jessica says that through the difficult years, from diagnosis to treatment and the many trials in between, Conner’s two brothers Kyle and Will had to say goodbye to him for weeks at a time and wait in hope that this time Conner’s muscles would get better. “I can tell you all the beautiful things we have done as a family and learned as a family and how much we have grown as a family since Duchenne came like a bull dog into our lives.... but I can also tell you about the pain and what Conner and our two other little boys have experienced because of Duchenne,” says Jessica.
Today, Jessica and Chris are grasping onto the hope that the treatment Conner received will continue to benefit him and all boys with Duchenne - for years to come.
Jessica is thankful to NPR for shedding light on DMD and sharing Conner’s plight and new hope. “Thank you to NPR for highlighting Conner’s story and keeping our hope alive and giving hope to other boys just like him,” she said.
Visit KOMD online here and make a donation to help Conner and all battling DMD.