Cure for Cole
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!
We found out today that the local firefighters union is sending Cole and I to Disney for a week this Sunday. He is so excited! I can't wait to see his face when he meets Mickey! Thank you to everyone for your prayers and support. You all are truly a blessing to us!
Cole was a trooper through all of that, so I took him for a treat to the Cincinnati Zoo. He loved it! His favorite was the polar bear. He growled at it and told him to wake up! We met up with our other Duchenne friends for dinner and goodbyes.
I am so happy I didn't sit back and listen to the Doctor who said "Take him home & love him, there's nothing we can do". There may not be a cure at this moment, but there is treatment to help prolong his life and make it the best quality it can be. We'll be back to Cincinnati in January.
Thank you everyone for your continued support. This is a long, expensive road ahead of us. Any help is appreciated! Please continue to share Cole's story and raise awareness of Duchenne Muscular Dystrophy.
Took the 6:30am shuttle to the hospital to make sure we were first in line at the lab when their doors opened because he was fasting. Cole had 11 (no that's not a typo) tubes of blood drawn. What a trooper he was too; didn't flinch, cry, or move... just watched. After that I rushed him to the cafeteria for some food afraid he was going to pass out on me. He was fine though. He had an echo, EKG, and DEXA scan after that. I was so proud of him. He laid still for all of the tests and everyone commented on how well he was doing during the tests. I also got a phone call from the pharmacy in London and ordered 3 months supply of Deflazacort. It should arrive in 8-10 days, then he can stop the Prednisone. He had a 4 hour Neuropsych eval and in the middle of it the doctor came out to the waiting room to inform me he had put two chairs together, laid across them, & fallen asleep! Poor child was exhausted so we let him sleep and she did some paperwork. 2 hours later she woke him up to finish the test. He fought through it, but I had to call Mike to give him some extra encouragement and that seemed to work. We ran into another Duchenne family and went to dinner down at Newport on the Levee and let the kids take a train ride and go on a hamster ball- the pic below is of Cole in one. He absolutely loved it and made me so happy to see him enjoy something that I personally didn't think he would physically be able to do... But he did!
Thanks again to everyone who has read, shared, and donated!!!! We truly appreciate it, I can't thank you enough!!!!!
I want to thank each and everyone of you that have read & shared Cole's story. The more awareness there is of Duchenne, the better chance of getting funding to assist in finding a cure.
A HUGE THANK YOU to everyone who has made monetary donations. This wouldn't be possible without your help & with Dr. Wong confirming that we will need to follow up every six months, it is sincerely appreciated! Thank you, Thank you, Thank you!!!!