A missed opportunity for fellowship with the Pompe disease community
Sometimes being a parental caregiver involves coping with disappointment in life
Recently, we were putting things in place for a road trip this summer.
We’d planned to attend a pediatric Pompe disease conference in July, hosted by Duke University in North Carolina. My grandmother was going to come along with my 5-year-old son, Cayden, and me. However, the conference was recently canceled and will now be virtual.
While I’m grateful for the virtual conference option, I’m still pretty bummed. It would’ve been the first year that we’d be able to attend since Cayden was diagnosed with infantile-onset Pompe disease via newborn screening back in 2018.
In prior years, we didn’t have the money to make it to North Carolina. With all the gas I’d need to drive down from Pennsylvania, as well as the hotel costs, I wasn’t able to afford it. I’m a young, single mom, and with all of the other expenses in life, I didn’t have the funds. But this year, we had an amazing mom from our Pompe community raise money to send a family to Duke, and we just so happened to be the family that was nominated.
A stroke of bad luck
I was so ecstatic to hear that our family had been nominated to go to Duke. I’d love for Cayden to be able to attend the conference and meet other kids just like him. He also would’ve had the chance to see the doctors there, as we’ve been wanting to see them all these years. All of the travel, lodging, appointments, and even some food costs would’ve been covered. This was an opportunity I just couldn’t pass up!
But life doesn’t always work in our favor. A few weeks ago, Duke announced that the conference would be virtual only. I’ve been debating whether or not we should still go down to see the team at Duke. After lots of thinking and a few tears, I made the hard decision that we wouldn’t go this year.
For me, the conference would’ve been the main purpose of the trip. Seeing and meeting all of our Pompe family in person for the first time was something I really looked forward to. I’ve made all of these amazing friendships over the years, and it would’ve been great to finally see all of the faces in person instead via a video call.
I’m aware that Duke probably has an important reason for making the change. But it doesn’t mean that I can’t still be disappointed. Lots of rare disease families look forward to these events. It’s not every day that we get the chance to hang out and connect with families just like ours. So when the rare chance arises, we get stoked!
Hopefully, next year there will be an in-person conference, and I’m going to do everything in my power to make sure we get there. Not only will it bring me joy, but I’m almost certain it will also be beneficial for Cayden.
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Comments
Dwayne Wilson
It breaks my heart that you and Cayden and all the other Pompe families and little warriors can not meet in person for the Duke Pediatric Conference since it has been canceled this July for a live, in-person event and now only being held virtually. I don't understand how the Pediatric Conference which was held last August in-person and was announced to be moved to July this summer so more parents and families could attend before school starts turns around a week before the Adult Duke Pompe conference is held in-person and cancels the pediatric conference in-person. So the Adults can meet live in April but not the families and kids in July. It makes no sense to me. With so many more States doing Newborn Screening, there have been alot of new families welcomed into the Pompe Community as their babies have just been diagnosed with Pompe. The Pediatric Pompe Conference is the most important event for Newborn Screening and Families getting to know their tribe and learning about Pompe disease. It is sad to hear about the Pediatric conference and I wish there were other Organizations to step up and hold a Pompe conference this summer.