2018 has been a very busy year for The PMD Foundation. It has also been a very busy year for The Manley Family. We just returned home last week from Children’s Hospital of Philadelphia (CHOP) after a successful hip surgery and installation of a G-tube for my son, Jaden. We are now focused on healing and putting on some weight and getting healthy for spinal fusion surgery in the Fall.
I wanted to take moment to share our 2018 experiences with you. This past April I wrote about Dr. Fatigue as we prepared to take Jaden to CHOP to be evaluated. We spent two days at CHOP meeting with their Leukodystrophy team to get an overall picture of Jaden’s health.
After meeting with the team I came away with regret, I regretted not finding them sooner.
Spending two days with a complete team of doctors that not only understood PMD but have seen and treated many others with PMD provided a sense of understanding and comfort that we have never known before.
When trying to explain our experience to friends and family upon our return I used the following analogy: If you owned a Lamborghini and it needed service you could take it to your local auto repair garage. It has tires and a motor like the other cars they work on…. but they do not have the specific training or tools and experience to properly service your unique Lamborghini.
Our PMD kids are Lamborghinis and it is important that we take them to the places that have the knowledge and equipment to properly take care of them.
The local doctors that care for our kids are wonderful but lack the same experience or tools they need to give the best care possible. We left CHOP with an individual care plan for Jaden that gave us options we didn’t know were available before our visit.
I share our experience with you because as I mentioned earlier I regret not finding CHOP sooner and I feel it is important that we, The PMD Foundation, encourage our families and our community to search out a Leukodystrophy Center of Excellence like Children’s Hospital of Philadelphia in your own geographic area.
Find them early and have your PMD warrior followed by them with an individual care plan to meet their individual needs. You can find a center near you by following this link to the Global Leukodystrophy Alliance website. I can also tell you that as it relates to Dr. Fatigue, I have decided I would much rather travel 6 hours to Philadelphia and spend 2 days seeing all the specialists in one spot than making several different appointments and trips locally chasing down referral after referral.
May everyone have a fun and safe summer and stay cool!
The PMD Foundation