Leukodystrophy Family Conference 2018

This video includes interviews with families whose children have leukodystrophies, and highlights from the first ever Leukodystrophy Center Family Conference, held at Children’s Hospital of Philadelphia in 2018.

Transcript

Leukodystrophy Family Conference 2018

Female: So, good morning and thank you so much for joining us, and we're so appreciative that you've all come so far to be part of this event and part of this meeting.

Female: So, one of my first impressions was what a phenomenal job CHOP has done to make this happen. This … all the months of preparation and the pulling it together and the great activities for the kids — I mean it's been phenomenal.

Female: I think for me just get more of a deeper understanding about the neurons and the OLS so that the problem is so complicated on so many levels, but also that there is hope that there will be a cure found.

Female: This is the first time she has been around with any other children with this condition, and for her and for me, too, to see her be able to react and engage with other children with the same condition; we don't get that at all. And I think that's been hugely beneficial for her to relate to other children just like her, and also for the parents too.

Daniel: Biggest takeaways is to meet other families going through what we go through. We have friends at home that you share your stories with, but they don't relate to you at all. You can … but when you come and you meet other families that are going through the same struggles that you go through on a daily basis, they relate to our stories of struggles and it's just good to have that support system.

Female: Up until this summer, we'd never met anybody who had H-ABC even though we live in the Netherlands. So, being here and meeting other families, there's no words really to describe what that's like.

Also for Serena, our daughter, for her is just so special that there are other children, when we explain that go through the same process. You can see how much she enjoys it.

Mindy: I hate when we leave things like this. I met a couple other families before, but I hate leaving just because we feel the most comfortable with these families that, you know, go through the daily struggles that we go through too. And I wish we could do something like this every year.

Male: For me, I think it's to know the ties with the same situation, and we are very, very happy to share our experience with other people, our ideas and our firsts. And it’s important recognition for the future.

Female: Children across countries who've never met each other before, but they smile at each other; they see each other. I think that at some level, or something, they recognize one another and they hold hands and that for me is a symbol of this … this whole get together, and we'll definitely be what Serena will take away in her heart as we will do.

Topics Covered: Leukodystrophy, Hypomyelination with Atrophy of the Basal Ganglia and Cerebellum (H-ABC), Aicardi-Goutières Syndrome (AGS), Alexander Disease, 4H Leukodystrophy

Related Centers and Programs: Leukodystrophy Center, Division of Neurology


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