For my family, 2018 was a year filled with bigger challenges than other years. My son Jaden spent the summer recovering from hip surgery as well as a feeding tube in June. In October he endured 17 days at Children’s Hospital of Philadelphia (CHOP) having spinal fusion surgery.
The first 11 days were spent in traction, with a Halo screwed into his skull that had 10lbs of weight pulling on it. On the other end, they placed a rod through his right Femur that allowed a 20lb weight to pull him in the other direction. The traction device was straight out of medieval times. However, while it looked barbaric it did its job and allowed Dr. Keith Baldwin of CHOP to correct his spine which had rapidly deteriorated to over a 120-degree curve. For this, we will be eternally thankful to the skilled Doctors and wonderful care he received at CHOP!
During the 11 days in traction before Jaden even had to undergo the 10 1/2hr spine surgery, Jaden was flat on his back for 22 hours each day only able to sit up in a wheelchair for 2 hours a day while his head was still kept in traction. This meant we had a lot of time to stare at the walls and ceiling in his case. It was a very difficult time physically, of course, but also mentally. I spent a lot of time thinking about Jaden but also about all of our PMD families and the difficulties our boys and our families face.
I reflected on when I first got involved with The PMD Foundation about 15 years ago. I wanted to help my son. I wanted to find a cure or treatment, anything to help Jaden. During our time at CHOP, I realized that my focus has now shifted. While I still want to help Jaden of course, I realized that my involvement now in The PMD Foundation is to help others.
Due to the progression of PMD and Jaden’s age, the likelihood of us finding a treatment that will help him is very slim. However, our time at CHOP reminded me of why I need to be involved. I need to stay involved to help future generations. No child should have to endure what Jaden went through. No families should have to go through it with them. So our time there cemented my commitment to continue the fight to find a treatment for PMD.
The PMD Foundation is working hard to finalize and fund a Retrospective Natural History Study for PMD.
This will be the biggest moment in The PMD Foundation’s History.
Our commitment to getting this study done for all those with PMD past, present, and future is the most important thing we can do as a patient advocacy group in order to help researchers that are working on treatments and therapies that will help our boys and families in the future. Without a Natural History Study, these potential treatments will stall and not gain much needed FDA approval. Our goal is that the work we are doing now will help families in the future to have hope, a better quality of life and maybe even get to know a world without PMD.
We need your help! You can help financially by donating to our cause or by volunteering your time. Go to our website www.pmdfoundation.org to donate or contact us to get involved.