Research has made huge progress over the last 10 years and there are now 3 drugs that are in clinical trials that are looking very promising for the Duchenne community. With the FDA considering these New Drug Applications, my family and I are hopeful that a cure may be found in time to save me. The doctors say that my generation of boys with Duchenne may be the last to die or the first to survive….. and I want to LIVE!!!
Cincinnati Children’s Hospital Medical Center has a Neuromuscular center run by Dr. Brenda Wong, who is known throughout the Duchenne community as one of the top specialists of DMD in the country. He will be seen by Neurology, Cardiology, Pulmonology, Endocrinology, Neuropsych, have Physical, Occupational, and Speech Therapy evals, Social Work, Care Management, and a Nutrition consult. He will also have multiple lab draws and radiology studies such as an EKG, Echo, DEXA Scan, and a Holter monitor for 24 hours. They will then gather all the information together and develop a treatment and care plan and adjust his medications for him, hopefully with the goal to get him into a clinical trial. As his mother, I want him to get top notch care and treatment, giving him the best chance to live. I believe Cincinnati will give him that chance. This trip is costly and we are anticipating follow up appointments every 6 months as well as his regular appointments at home in Virginia, along with the mounting medical bills, co-pays, therapy, and medical equipment costs- and that is why I am asking for help. Cole’s father passed away from suicide when he was only 8 months old. As if that wasn’t devastating enough, Cole was diagnosed with Duchenne almost exactly 2 years later. It has been a heartbreaking last few years along with financially burdensome. Any help is appreciated. I just want to give my child a full, happy life, for as long as God will let me have him!
It only takes one muscle to make a difference- your heart!
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